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PAINCAST - a creative podcast from the PAINSTORM clinical research team and its patient partners exploring neuropathic pain and the impact of living with it. Presented and co-produced by BBC broadcaster and writer Fiona Talkington who lives with neuropathic pain.
Artwork: "The Pain of it All”, Michele Angelo Petrone, Wellcome Foundation
Speaker 1: [00:00:10] Hello and welcome to the Painstorm podcast. I'm Fiona talking. [00:00:14][3.8]
Speaker 2: [00:00:14] And I'm Mark Smalley. [00:00:15][0.7]
Speaker 1: [00:00:15] And in this podcast we're exploring neuropathic pain, what it is, what it's like living with it, and we're meeting some of the people behind the Massive Painstorm Research project. [00:00:26][10.2]
Speaker 2: [00:00:27] Fiona Before we go any further, Neuropathic? [00:00:28][1.9]
Speaker 1: [00:00:30] Textbook answer, Mark or full graphics? [00:00:32][1.8]
Speaker 2: [00:00:32] I think I'll go for both actually. [00:00:34][1.4]
Speaker 1: [00:00:36] Well, burning, stabbing. Shocking. Relentless. Too hot, too cold, freezing, numbing. Walking on fire. Cramping. Loud. Too loud. Short answer there. It's a chronic pain caused by nerve damage, which can happen in a number of ways, for example, through chemotherapy, diabetes or HIV. And it generally doesn't respond well to medication and certainly not paracetamol. [00:01:02][26.1]
Speaker 2: [00:01:03] The issue of medication is certainly one of the topics we'll be discussing over this series. But back to Pain Storm itself. It's a four year research project which sits under the umbrella of the Advanced Pain Discovery platform, bringing together academics from six universities, researchers, clinicians, pharmaceutical companies and patient partners, all people with lived experience of neuropathic pain from tissue supplements in Europe. Imaging how psychosocial factors impact people living with neuropathic pain. The aim is a bringing together of all of this work, which will make a huge difference to lives. What you'll see. [00:01:41][37.2]
Speaker 1: [00:01:41] Yes. And for someone like me living with this pain, that's actually quite emotional. The thought that this immense work is going on and will make a difference to the 8% of the UK population who live with neuropathic pain. That's an awful lot of people living under the shadow of hidden disability and all the misunderstanding and the discrimination that comes with that having an absolutely devastating effect on life. And of course, one of the aims of this podcast is to widen the awareness and the understanding of peripheral neuropathy. [00:02:14][32.3]
Speaker 2: [00:02:15] And leading the pencil research project is Professor David Bennett. [00:02:18][3.7]
Speaker 3: [00:02:19] I'm a neurologist. I'm a that means a clinician that deals with neurological disorders and I'm an academic. So at the same time I'm a researcher and my official title is I'm head of the division of Neurology in the Nuffield Department of Clinical Neurosciences at the University of Oxford. But essentially I split my time between seeing patients with neurological problems with a particular interest in peripherally in pain and also running a large research programme, trying to understand what causes and how we can treat nerve injury and how we can prevent neuropathic pain. [00:02:50][31.1]
Speaker 1: [00:02:51] And I asked Dave, what happens when a nerve is damaged? [00:02:54][3.5]
Speaker 3: [00:02:55] At the end of the day, the nervous system really works and the principle of electrical signals and you could think of nerves a bit like wires and that wiring has gone wrong after an injury and that's leading to miscommunication, a lack of signals when we would normally have them, and also access signals which are particularly important for the generation of of neuropathic pain. The relationship between nerve injury and pain is a complex one. And I think on a structural level, if you were to cut a nerve that the nerve provides, the central nerves provide a connection between the skin and the spinal cord. They currently they're carrying signals from things in pain impinging on your skin to the spinal cord, and they're carrying those electrical signals. And what will happen if you were to cut the trunk of a nerve? Those parts of the nerve beyond that region which has been cut will degenerate and say you lose that connectivity to where the nerve would normally be breaching, which is the skin. And that actually does lead to something of a paradox because you lose that connectivity. But at the same time, in not everyone but in a group of people, the sensory nerves essentially, and not only the sensory nose, but their connections within the spinal cord and then in the higher brain centres become hyper excitable. They start generating electrical activity when they shouldn't. And that to an extent is at the heart of much of neuropathic pain. And that can lead to a paradox which some patients will ask about. They'll say, Why are my feet numb but painful? It does seem like a real paradox, and that that is because the terminals have been damaged and they're known no longer reaching the skin. So if you were to brush or put something hot onto the skin, you can't feed it. But they're developing electrical activity of their own accord, which they they shouldn't be because they've been damaged. And in a way and I guess in a simplistic term, that's almost like a that is creating the illusion to the brain. It's thinking that there's some activity there when in fact there is not. And so you've got this tremendous paradox of numb, painful feet. [00:05:03][128.0]
Speaker 1: [00:05:05] Professor David Bennett, and we'll hear from him again. Later as one that some of the other people involved in pain stole. [00:05:11][6.4]
Speaker 2: [00:05:12] It just struck me that fear that they've talked about something you've mentioned in passing this paradox that numb but still painful feet. [00:05:20][8.5]
Speaker 1: [00:05:21] Oh, it's so true. And people think that if you're fit enough that you can't feel pain, but you can. And that numbness, well, for me anyway, fluctuates between a really unsettling feeling that my leg just isn't there at all to a real frozen numbness. And meanwhile, the burning and the stopping and the electrical shocks continue. Well, talking of fate, I've been talking with a fabulous dancer, Anisha Subramaniam, who's done such profoundly expressive work to do with pain. And Mark, you met up with a couple in Bristol to talk about the impact of neuropathic pain on their relationship. [00:05:58][37.3]
Speaker 2: [00:06:00] Yes, I had a really interesting conversation with Alessandra and Sophia Noble, and he was involved in a car accident seven years ago and suffered double whiplash. His car was shunted from behind and then into that car and this caused severe damage to his neck and then to his foot. I asked Alexandra about the long standing effects of that accident. [00:06:24][24.2]
Speaker 4: [00:06:25] The first consequence is mount. My whole life was shattered. I was at a point in my life where four years ago, before I graduated university, I was an executive head chef, relatively successful as far as I was concerned, and exploring the world and everything. And suddenly I couldn't go walking in the mountains. I couldn't dance, I couldn't make love. I couldn't have my nieces and nephews run up and give me hugs without the screaming in the back of my head. This is going to hurt. It made me very depressed and it massively changed my life. I'd say it's like you're having to start from zero again. [00:07:07][41.5]
Speaker 2: [00:07:08] And just seven years on, could you give me a sense of your journey through pain has evolved over time? [00:07:15][6.9]
Speaker 4: [00:07:17] Yeah, Initially I was following what the doctors were saying at the beginning. They gave me high levels of medication. This got rid of the pain, but resulting factors. It felt like I was basically drinking, bottled from a day I was drunk. In some aspects, that's any way to describe it. Initially, I was taking Coca-Cola more when I started obviously injury than other sorts of doctors, and I prescribed me medicine. The prescription they were putting on morphine, liquid and modified with this tablet plus of morphine. And then the box and I had discussions with my doctor about reducing pain medicine. This is going to be a more pain. But I said, will I be more weight, more reset and less groggy. That just started me looking at other things like I. I now go for more hope herbal remedies like if I if I can if I'm getting stressed I can become multi mindfulness. I also because I used to swim before it my injury daily I after starting to find a physiotherapist who'd showed me a different way to swim, have something called a centre snorkel. I started swimming and a sauna, almost a religious daily thing that I would do every single day. You'll never get rid of the pain. The pain is a constant cycle. [00:08:39][81.8]
Speaker 2: [00:08:39] If I could bring you in here. Before you met Alessandra, you know, what was your own personal experience of pain? [00:08:46][6.8]
Speaker 5: [00:08:46] I've always thought of myself to. [00:08:48][1.9]
Speaker 1: [00:08:48] Be very fortunate because in the past I have been aware of, you know, certain conditions and chronic pain. Me, myself, I thought of myself as relatively healthy. [00:09:00][11.6]
Speaker 4: [00:09:02] I don't suffer from any. [00:09:04][2.3]
Speaker 1: [00:09:04] Medical conditions that cause me pain. [00:09:06][1.7]
Speaker 4: [00:09:08] I've been. [00:09:08][0.4]
Speaker 1: [00:09:08] Fortunate never to break a bone in my body, so I'd like to think. [00:09:13][4.3]
Speaker 4: [00:09:13] I've been lucky. [00:09:14][0.7]
Speaker 1: [00:09:14] That way. Or maybe I've just not lived enough. [00:09:15][1.2]
Speaker 2: [00:09:16] And then tell me if I can ask what it was like when you met Alessandra, beginning to get an insight into chronic neuropathic pain. [00:09:26][9.8]
Speaker 4: [00:09:28] It was a learning experience. [00:09:30][2.4]
Speaker 1: [00:09:32] Alison Joe is a very bubbly man in nature. [00:09:37][4.7]
Speaker 4: [00:09:39] So initially it was, I think I found it. [00:09:43][4.0]
Speaker 1: [00:09:43] Difficult to comprehend. [00:09:44][0.7]
Speaker 4: [00:09:46] His condition of chronic. [00:09:47][1.0]
Speaker 1: [00:09:47] Pain. [00:09:47][0.0]
Speaker 4: [00:09:49] Because, you know, you look at his Longo 64, he looks healthy. [00:09:53][4.1]
Speaker 1: [00:09:55] He's naturally a very bubbly, polite, you know, jovial person. [00:09:59][3.8]
Speaker 4: [00:10:01] So initially it was difficult. [00:10:03][2.5]
Speaker 1: [00:10:04] For me to understand. And there will be times whereby. He would be quite ratty. And I would think, Oh, well. [00:10:13][9.2]
Speaker 5: [00:10:13] If I said if I. [00:10:14][0.7]
Speaker 4: [00:10:14] Done. [00:10:14][0.0]
Speaker 1: [00:10:15] But then he would. [00:10:15][0.5]
Speaker 4: [00:10:16] Have to mind me. But you know, I'm in pain. I'm in. [00:10:18][2.8]
Speaker 1: [00:10:18] Pain. I have learnt to have. [00:10:23][5.0]
Speaker 4: [00:10:24] More. [00:10:24][0.0]
Speaker 1: [00:10:25] Compassion. [00:10:25][0.0]
Speaker 4: [00:10:27] For his condition by just taking time to really think. [00:10:31][4.8]
Speaker 1: [00:10:32] And put myself. [00:10:33][0.8]
Speaker 4: [00:10:34] In his position or a position. I mean, I'll never really know what it feels like for Alessandra. [00:10:39][5.3]
Speaker 2: [00:10:41] That's beautiful to hear. How's that for you? Alessandra To. To hear that. [00:10:45][4.4]
Speaker 4: [00:10:46] Yeah, if I've, I've this goes back to before in Sofia. The first time I told him about my pain. And so I've come from an extremely active life to wanting to conquer everything again with the walking stick. And you're now having to approach when meeting someone for the first time. Oh, I have a walking stick. How are they going to think I'm a child? How are they going to think how it works? How do I approach this thing? And the only way to do it is just tell them. I was actually scared the first few times. I was petrified that what woman is going to want a man with walking stick? What woman's a man with chronic pain and Jekyll Hyde? It has been a learning curve with Sophia. She's afraid to tell her about my pain, and she's had to learn how I am because I tend to push myself. I'm used to just pushing myself till I fall asleep. That's not good with a chronic injury. But the difference between I've noticed with Sophia, and maybe that's why it works better with Sophia than I'm not married now. Obviously has two other partners experiences. They have seen me as broken and babied me. They wouldn't let me carry the heavy shopping. They would always try and pre-empt anything. Sophia is different. She thinks she might be cold, but she's not. She waits for me. She lets me pick heavy things up and be a man. I think I'm. And when I need help, I'll ask. She's still here so obviously sees the good in me, but the pain is just can be so debilitating. It can be a cloud and it puts you to tears. [00:12:35][109.0]
Speaker 2: [00:12:36] Sophia, how's it for you hearing that appreciation for your acts of empathy? [00:12:41][4.8]
Speaker 5: [00:12:42] It sounds good. [00:12:43][1.1]
Speaker 4: [00:12:43] Honestly, but. [00:12:44][0.5]
Speaker 1: [00:12:45] You know, I don't reveal too much in praise for myself because I think. [00:12:49][4.3]
Speaker 5: [00:12:50] Alexandro is the real. [00:12:51][1.0]
Speaker 1: [00:12:51] Hero. [00:12:51][0.0]
Speaker 4: [00:12:52] Here. I experienced. [00:12:53][1.4]
Speaker 5: [00:12:54] Some of those times whereby. [00:12:55][1.0]
Speaker 4: [00:12:55] You know. [00:12:56][0.4]
Speaker 1: [00:12:56] You've had the pain and been practically bedridden in tears, you know, expressing thoughts of just wanting to end it all. And, you know, those have been. [00:13:07][10.7]
Speaker 4: [00:13:07] Some of the most. [00:13:07][0.2]
Speaker 5: [00:13:08] Painful times for me. [00:13:09][1.0]
Speaker 4: [00:13:10] And sometimes. [00:13:10][0.5]
Speaker 1: [00:13:12] You know, I say. [00:13:13][1.2]
Speaker 5: [00:13:13] Oh, if only I could just maybe. [00:13:15][1.3]
Speaker 1: [00:13:15] Take some of your. [00:13:15][0.6]
Speaker 4: [00:13:16] Pain. [00:13:16][0.0]
Speaker 1: [00:13:17] Just experience some of your pain just to give you that respite, I would say. [00:13:22][5.5]
Speaker 4: [00:13:24] Because those times are very, very difficult. Well, obviously, for you. But, yes. [00:13:30][6.7]
Speaker 1: [00:13:31] It's also not easy for me. [00:13:33][1.5]
Speaker 4: [00:13:33] To see you. [00:13:33][0.4]
Speaker 1: [00:13:35] You know, when you're in that much pain. Alessandra and Sophia Noble, who might met up with at their home in Bristol. Mark I was really struck by their willingness to explore their relationship in the context of chronic neuropathic pain. And that's one of the many difficulties of living with painful neuropathies that people can feel so isolated and so abandoned, whether within families in social groups and at work, because they just don't feel understood. [00:14:03][28.0]
Speaker 2: [00:14:04] Yeah, that's certainly one of the things that Alison Drew was sharing. I mean, he had to give up his work as a as a chef, and it's been hard to find a way through since then. Got the sense of the reassurance of the acceptance of Sophia for his condition, which he did tell me the number of previous partners hadn't. [00:14:26][22.2]
Speaker 1: [00:14:37] You're listening to the Brainstorm Podcast with Marc Smalley and Fiona Taunton, and do feel free to get in touch. Would love to hear from you. Details are just below and we very much want to reflect how life can be for someone living with neuropathic pain. So coming up in this episode, some thoughts around why neuropathic pain has frequently been overlooked by medicine. [00:15:00][23.1]
Speaker 4: [00:15:00] There isn't one patient's organisation. I think it's very important to increase awareness of this condition. Massive and the diagnosis of neuropathic pain in primary care. One in two are not diagnosed and they the patients can't diagnose themselves because they don't make the connection between the pain they have and the fact that they have diabetes. Public health education is very important in this area, which is really poorly appreciated at the moment. [00:15:28][27.0]
Speaker 1: [00:15:28] Professor Solomon Tesfaye of Sheffield University and I'll be talking to two professors, Irene Tracey and Dave Bennett, to tell us more about Pain Storm. And there's a voice you might recognise from BBC News. [00:15:42][13.4]
Speaker 2: [00:15:43] And across this series of thanks to podcasts, we'll be talking not just to people living with chronic neuropathic pain like Alessandra, who we had earlier, but also to pain students, medical researchers, clinicians and patient partners. And we're going to meet a few of them now in what we're calling pain storm postcards to shed light on the variety of ways in which it's being approached. [00:16:05][22.0]
Speaker 5: [00:16:06] I'm Whitney Scott. I'm a clinical psychologist working on Pain Storm, so I'm involved with some other colleagues looking at psychosocial factors. I grew up with a parent that has chronic pain and I saw the impact that that had on my mum. And I remember when I was an undergrad, I read a paper looking at sort of social influences on pain experiences, and it really connected with my own experience of growing up with a family member with pain. And it just really got me fascinated in how, you know, the people around us influence our pain experience. Hi, my name is John. I'm a clinical research nurse working with David Barnett and I recruits. My main job is to recruit participants for pain storm, especially diabetic neuropathy and small fibre neuropathy and other peripheral neuropathy. Probably the pain actually got my attention and I just applied and I don't know how I got the job, but I got the job. But now it's all changes. Just because they were actually selling like in the past, they couldn't actually explain the pain they experience because they can't show any evidence. And also all the tests come back normal. So some people actually explained that like medics or whoever actually told them, like the problem is actually in their head and followed. [00:17:29][83.0]
Speaker 4: [00:17:29] And I do data research specialising neuropathic pain with them. And I think what we really want to do now is come out of our silos. [00:17:38][9.1]
Speaker 5: [00:17:39] Yeah, my name is Athena Schmidt. I'm a physiotherapist by training, but also an associate professor here at Oxford University with a specific interest in neuropathic pain, but also specifically in patients who have so-called entrapment neuropathy. So these are relatively minor nerve injuries which are caused by compression of nerves, but they actually lead to quite debilitating pain. And what I think is very exciting about it is indeed that we bring together so many people with different expertise and thinking. Caps on this initiative can definitely be a game changer for for pain as such and for people living with pain. [00:18:17][37.8]
Speaker 1: [00:18:18] And there'll be more postcards from the Pain Storm team and will meet some of my patient partner colleagues next time you come from such a wide and varied background and have already made a big impact on pain Storm. And as I said, what we'd love is if we could really widen the awareness of peripheral neuropathy and neuropathic pain across the whole medical profession and in the general public. [00:18:41][23.3]
Speaker 2: [00:18:42] In which, like Fiona, would you be willing now to say something more about your own experience of living with neuropathic pain? [00:18:48][6.1]
Speaker 1: [00:18:49] Okay, Mike, thanks. I'll, I will keep it short for now though, if that's okay. My own neuropathic pain emerged in a strange and very much a life changing way after I'd had surgery, chemotherapy, radiotherapy and a year's worth of her septum infusions for breast cancer. It took a really long time and some very hard work on my part to find recognition for my pain and getting some understanding. It continues to have a major impact on my life, my working life as a broadcaster, on travelling. And I can't tell you how stressful a simple commute to London can actually be. [00:19:27][38.4]
Speaker 2: [00:19:28] And we will follow this up, if you don't mind the episodes to come and might even invite you to share some of your. Poetry with us. I don't mean that as a punishment. And perhaps I can be forgiven for coming to this topic of neuropathic pain as a generalist, knowing next to nothing about it. But what I'm seeing is how long it's been overlooked because it's fallen between a number of stools. It's not been owned by any one branch of medicine or patient group or medical charity. As Solomon Tesfaye told me, Fiona, when I came to hear your keynote speech on Neuropathic Pain at the Royal Society of Medicine in London. Solomon is a professor of diabetic medicine in Sheffield with a long standing interest in diabetes induced pain. [00:20:15][46.9]
Speaker 4: [00:20:15] Diabetic peripheral neuropathy has the biggest impact in terms of the cost of diabetes in the UK. The NHS spends one in £140, is spent on the diabetic foot and diabetic peripheral neuropathy. And that really increased my interest and I started to do research in this area to try and change this unacceptable state of affairs to improve outcomes for patients. Once a patient develops a foot ulcer, a 50% mortality within five years, and the diagnosis of neuropathic pain that can easily be treated with current medications, I thought not expensive. And this really fuels my interest in this important area. I think patients with painful neuropathy, painful diabetic neuropathy are extremely disabled. They have a number of problems, not just with the pain but the impact. [00:21:10][54.9]
Speaker 3: [00:21:11] Of the pain. [00:21:11][0.2]
Speaker 4: [00:21:12] On their life. They have anxiety, depression, difficulty in sleeping, and they are in a constant tiredness, socially isolated. And unfortunately there is poor understanding and appreciation in general practice. And GP's do not know a great deal about these areas. And because neuropathic pain presents in different conditions and no one owns it, as it were, and there and quite the diabetes UK and there are other is coeliac society who advocate for their condition examples. But there isn't one patient's organisation. I think it's very important to increase awareness of this condition and is massive. And the diagnosis of neuropathic pain in primary care one in two are not diagnosed and they the patients can't diagnose themselves because they don't make the connection between the pain they have and the fact that they have diabetes. They think it's part of an ageing process and the awareness needs to be increased. This can be done by patients organisations and I think public health education is very important in this area, which is really poorly appreciated at the moment, where one in two patients are suffering without the diagnosis being made. It has to be a wake up call and this could be done by the Royal College of General Practitioners. There are many educational opportunities to increase awareness and this has to start in medical school, you know, all the way to being a doctor. [00:22:48][95.4]
Speaker 1: [00:22:48] Or as Solomon was saying there, diabetes is the number one cause. But painful neuropathies can be a side effect from cancer treatment and many other conditions give rise to it. Is Dave Bennett again? [00:23:02][13.3]
Speaker 3: [00:23:03] Somewhere around 50% of people with diabetes will develop a peripheral neuropathy and of those patients that develop peripheral neuropathy, 30 to 50% will develop troubling neuropathic pain. So this is a huge issue at population level and you know, within the within the UK we've got rates of seven, 8% of people with with diabetes. So so it's it's a common problem but there's definitely not the only cause. Very commonly unfortunately patients that have spinal cord injury get terrible neuropathic pain. You can get infections, it can cause a preference of this. So one example is people may have heard of shingles, which is a viral infection that usually affects particular. You will get a rash in a particular region of skin. But actually the sensory nerves we were talking earlier about how sensory nerves provide connections to the skin that innervate that skin also damage. And that is an important cause of neuropathic pain in the community as well. There are other infections, so we know that having HIV can be associated with neuropathy, probably for quite complicated reasons. Maybe not just the virus itself, but also some of the treatments that we use for HIV can cause neuropathy as well and many drugs. Unfortunately, one of the side effects of a number of drugs is causing peripheral neuropathy. There are important toxins that can cause peripheral apathy. Let's be honest. Another one that's very common in the population is alcohol. So if you were to drink in excess for four. Period of time. That also increases your risk of peripheral neuropathy. [00:24:37][93.9]
Speaker 1: [00:24:38] Now, alongside Dave Bennett, when I went to meet him in Oxford to hear more about pain, Stone was his colleague, the renowned neuroscientist Professor Irene Tracey, who uses brain imaging to better understand pain pathways. Master of Merton College. She's Oxford University's next Vice-Chancellor. And she told me what happens after a nerve has been damaged. You see things and you hear things and you taste things and you smell things. These are all perceptions, you know, you have a nose that is smelling and is the do the hearing and eyes that do the seeing. But it's the brain that receives the signals from those organs and puts it together. And then you have that perceptual experience of seeing something or smelling something and pain so different. It is something that arises because the brain receives those signals from those damaged peripheral nerves and it will interpret them and give you this experience that is out, that hurts. And that's a mystery still for us to disentangle as to which bits and how that works and how that gets altered. So the one thing we have learnt and they've, you know, beautiful explanation there in terms of the damage that occurs and this constant firing of these signals that come in is that they don't just hit a central nervous system. What I mean by that is your spinal cord in your brain as a sort of wall that it hits like the see pounding, you know, those systems, the spinal cord, the brain react to that constant barrage that's coming in, unfortunately. And the way they react to it is they start to set off changes that then oddly make it worse and start to turn the volume up. So a key strategy as well is to try and turn down these things that are now turning up the volume and and why the central nervous system does that. We can think about like in evolutionary terms, you know, in an acute sort of warning pane type model, you can sort of see the relevance of that because it heightens the pain. So you're reminded you've hurt yourself, you've got to protect yourself, you got to allow for tissue healing to occur. So that's why we sort of developed probably these capabilities of doing that, that the challenges in this constancy of these nerve sending signals and these become quite hard wired and really ratchet up. And so they become very problematic, obviously, for the patient. So in the end it could be that the peripheral nerve might be just sending a trickle in, but they've been massively amplified now by these processes, making the pain very painful. So we've got to turn them down. And I'm a big believer, you know, I spent my whole career, you know, looking at these changes in the central nervous system to stop the signals coming in, you know, go for the peripheral sockets if you can block them. And all these changes, the beauty of the human body and the brain and the spinal cord is that it's wonderfully plastic, which means it can melt in different directions. That's one way to think about it. So all these things that go wrong can reverse and calm down. If you could just take away that constant input. That's our hope in in many of the conditions. And of course, you know, the challenge is to find things that are going to stop those signals coming in and then to prove that there will be largely recovery of all those systems that have then sort of got overexcited. Let's move on to Pain Storm Day, perhaps as as leader of this project, would you like to introduce it? [00:27:35][177.5]
Speaker 3: [00:27:37] So this project arose as as part of an initiative really between UK Rye and a charity versus Arthritis UK all raise the kind of government funding for for medical sciences and political sciences. And what happened if we just go back a bit? I think the way it started is quite interesting, which I think it partly arose because first arthritis, which is a charity that is focussed on arthritis, actually did a survey of people living with arthritis to try and see what were their priorities and what was a significant problem for them And what they answer that came back loud and clear was pain. And I, I think that triggered them to think about actually we would they would like to have a kind of focussed funding call on pain and at the same time I think you care. I felt that actually again the time was ripe to, to and it was such a big problem in the population and that we don't have enough effective treatments that they also would like to have a funding call on pain. So they combined in this and in a nationwide call to really try and focus on chronic pain. And they asked for consortia. So groups of academics and industry and patient partners working together to try and form consortia to tackle the problem of chronic pain. And these consortia have taken various forms and pain. Stomp is very much focusing on neuropathic pain, so that's pain that arises due to damage of the nervous system. And so, you know, we were we've been very lucky in the UK to have this call and I think it kind of generated a lot of interest and I put together a team to try and meet. Meet this call and form. And I think so far it's gone very well. But to form a consortium to try and tackle the problem of of neuropathic pain, there are other consortia. So there's one working on visceral pain. There's a consortia that's trying to bring all these different datasets from the consortia together. There's another consortium working more on the psychological. Very much focusing on the psychological aspects of pain. And there's another consortium working on the relationship between early life events and and chronic pain. So the idea is kind of trying to tackle it from from different angles, but actually also to be more than the sum of the parts. So although we have these different consortia in what's called the Advanced Pain Discovery platform, which is this kind of big. Essentially the platform has arisen as a consequence of this funding call. We're trying to all work together so that we can bring all these different angles of pain in different pain conditions to really make traction on this problem. So our aspiration really ultimately is to have a develop a much better understanding of why neuropathic pain arises in people. To try and get better measures of pain, which is a real challenge both in people being able to communicate it and also as outcome measures in trials. If you can't measure something, it's very hard to to study and ultimately to try and improve treatment of neuropathic pain. And so we're looking at it in a very multifaceted way with with with really a consortium across the UK. So it's it's being coordinated here in Oxford, but we're also working with Imperial College in London, King's College in London, Dundee University, Aberdeen University. We have a little offshoot actually outside of the UK, which is with Columbus in in Ghent, and also collaborating with the other members of the Advanced Pain Discovery platform, as well as our patient partners and industry. So we're working with Lilly and AstraZeneca all together in an integrated way to try and tackle the problem of neuropathic pain. [00:31:39][242.0]
Speaker 1: [00:31:40] Professors Irene Tracy and David Bennett talking to me in Oxford about their work with pain, storm. [00:31:45][5.9]
Speaker 2: [00:31:46] And fear that someone who lives with neuropathic pain, What does it feel like when you hear experts like Dave and Irene and others that we're meeting? What's it feel like when you get the sense, the dimension of all this research that's underway? [00:32:02][16.1]
Speaker 1: [00:32:04] Oh, Mark, I can't tell you. There's just all sorts of emotions. One is that there's just such huge relief that there are actually people doing this work. And I felt so lost when my neuropathic pain emerged. And it took me a long time to find support and understanding and courage. But it's also incredibly moving. Hearing about their passion for their work and making me just feeling valued as a human being. [00:32:32][28.2]
Speaker 2: [00:32:42] You'll see the Pains podcast, in which we're exploring all sorts of aspects relating to neuropathic pain that results from nerve damage. And we'd like to hear from you, the listener as well. Meanwhile, Fiona, you've been looking at your dancing shoes. [00:33:00][17.3]
Speaker 1: [00:33:00] Ha! Yes. All right. Bare feet, Mark, actually, always bare feet. You know, the joy of lockdown was that I didn't have to wear shoes for such a long time. No shoes and my feet and legs screaming into the abyss. But you are right about the dancing. I'm plotting to get together with a wonderful dancer, Anish Subramaniam. I first came across her when I went to a conference called Encountering Pain run by Deborah Padfield a few years ago now. And that was a real turning point in my life. Learning about Deborah's work with using visuals to express and communicate pain. And I went to a workshop run by a new show about using the body and the gestures as an expression of pain. Now, recently I just caught up with her just before she was about to go on stage for a performance. So excuse the slightly dodgy line. [00:33:55][55.1]
Speaker 5: [00:33:57] Because I'm also so patient, done so very much to do with imagery. And therefore I've always found when you find the sense of imagery for yourself, then movement becomes very easy in the sense that through your imagination we can do so much that it can support us almost being free, moving and also gives the agency of movement to the person was moving. I remember when I first met to it was at a conference that Deborah Padfield had organised. We saw so many really striking images of pain as she was exploring how to communicate and express pain. So things like a razorblade in the strawberry that that sort of barbed wire from the wrists, but how we can look at those images, but then use them for our own expressions and how you did that so beautifully, how you brought us together with something that was painful to look at, painful to perceive. You were able just to make us feel, I know for me, certainly make us feel alive. And the freedom to adopt gestures that perhaps wouldn't normally be our practice and therefore to own our own feelings and our own responses to our own pain, perhaps. Is that something that you felt came out of work with, etc.? Yeah, that's beautifully put to Fiona. So when Deborah introduced me to the images, for me, the images you are so right is so powerful. Physically, I'm not a pain sensitive, but these images evoke such emotional response, and how I moved with them was a response in my own body. And that then connected to emotions that were coming. I was not sure whether it was the emotion that triggered the movement or the the other way around. What we did was we learned those images on my body as I dance, and for me, that would that conveyed much more power. So you felt that I was dancing a kind of universal pain? Yeah. How to create compassion for oneself and therefore be able to share that with others. That's where I think suffering. I live it. I found and certainly in the the workshop that I did with you and the one we shared on, on screen, that by using gesture, you're really enhancing your own relationship with your body. And it's not trying to distract yourself from the pain, but bringing it in more closely and being with it. And I find, especially with with hand gestures and the very beautiful and explorative ways in your own traditions that you use the hands, that there is something that brings things closer and allows me a sense of clarity about oneself. This is who I am now in this moment, and I can build a practice that I can then reach out and use. As a tool, as as something that when I'm feeling lost, I may just put my hands together and remind myself that this is my body and we're together and. Well, we have so much more to explore, and I know we're going to meet up and do some of this. But it's so interesting just talking now as a taster. Yes, absolutely. Thank you so much. Because what you said also certainly is it. That's my personal experience. What you talk about connecting to a self, even if it's a painful self or a physically painful self, I find it just as a you know, even in a regular basis when I move, I find I am a much more joyful person to be around. You know, of course, that's not as simple for chronic pain sufferers. But even so, there is something about I think what it is what I find in dancing is you distance in some way. You are so close to yourself. But I think you also create a distance from our own psychological drama. You're so much more in the moment. It's really something that he beautifully reminded me again of. [00:39:07][310.2]
Speaker 1: [00:39:08] And that was and it's just Subramaniam. I love her work and I'm so excited that I'm going to go and dance with her and continue to develop my relationship with my pain and my body. [00:39:17][9.7]
Speaker 2: [00:39:18] I've looked at the agenda for the conference. When you saw New working with Deborah Hatfield, it looked an extraordinary occasion of bringing together arts practitioners, artists, dancers, medical researchers. [00:39:33][14.6]
Speaker 1: [00:39:34] It was a real game changer in my life, and I came away feeling empowered and I had the courage to actually realise that there were people who could help and there were other ways of expressing pain. [00:39:46][12.1]
Speaker 2: [00:39:46] We're almost at the end of this episode, but here's a taste of next time. So just now I'm going to say you didn't notice it, but I was wincing because once again I was getting the baseball bat taken to my instep. There isn't a baseball bat, but it felt like it felt like I was being absolutely battered on my instep and for about three or 4 seconds. Very painful. But I just tense my muscles to try and distract from it. And I guess it worked because you didn't notice it and I didn't go too well. [00:40:20][33.5]
Speaker 1: [00:40:20] If that voice is in any way familiar. Well, in the next Pain Storm episode, we meet Frank Gardner, the BBC security correspondent who's been living with chronic neuropathic pain ever since he was injured in a terror attack. And I'll be talking with Professor Andrew Reiss, professor of pain research at Imperial College London, and a globally respected figure in pain research. And I promise I promise that I really will hit the dance floor with Anisha. But that's it for now. [00:40:50][30.0]
Speaker 2: [00:40:51] Almost. Except we haven't yet said what Kate Storm actually stands for. [00:40:54][3.5]
Speaker 1: [00:40:55] True. Well, here goes. It stands for Partnership for Assessment and Investigation of Neuropathic Pain Studies, tracking outcomes, risks and Mechanisms. [00:41:06][11.1]
Speaker 2: [00:41:07] Genius. Thanks for joining us. We're looking forward to next time from Meet Mark Smalley. [00:41:12][4.6]
Speaker 1: [00:41:12] Goodbye from me, Fiona talking to Many thanks and see you next time. [00:41:12][0.0]
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