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Examining misconceptions about Parkinson’s Disease and neuropathic pain, and discussing how best to manage persistent pain.

This edition of Airing Pain has been funded by a grant from The RS Macdonald Charitable Trust and The Stafford Trust

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Do you, someone you care for or perhaps your patients, suffer from persistent burning or gnawing pain or persistent pain related to Parkinson’s Disease? Many don’t know that often, neuropathic pain presents as a burning sensation. Persistent pain can impact all areas of our lives. It can stop us from sleeping, working and pursuing the hobbies we enjoy. Unfortunately, sometimes the healthcare professionals we see about our pain are unaware of the multitude of pain management techniques we can adopt to try and minimise the impact pain has on our lives. Different types of pain are widely misunderstood and many of us don’t know much about the conditions that can cause them. 

What do you think of when you think of Parkinson’s Disease? Many would say a tremor or shaking limbs, but persistent pain can be one of the most debilitating symptoms of Parkinson’s Disease. The fastest growing neurological condition in the world is poorly understood and pain is a major unmet need in those who live with it. Ground-breaking studies funded by the charity Parkinson’s UK are shedding new light on the relationship between Parkinson’s pain and neuropathic pain. 

In this programme, Paul Evans speaks to Kirsty Bannister, a doctor of neuroscience at Kings College London, who discusses the role that ‘pain-blocking nerve pathways’ and psychological status play for those who experience chronic pain. We also hear from former primary school teacher Janet Kerr, who shares with us her own experience of dealing with Parkinson’s Pain and how she manages it with things like yoga and distraction techniques such as massage. 

Issues covered in this programme include: Parkinson’s disease, insomnia and sleep clinics, burning and gnawing pain, pain signals, biomechanics, stress/psychological states and their impact on pain, analgesia, bradykinesia, gabapentin, pregabalin and managing chronic pain.


Contributors:

  • Carol Vennard, Clinical Nurse Specialist in Parkinson’s Disease Nurse Specialist, NHS Greater Glasgow and Clyde
  • Janet Kerr, ex-primary school teacher who lives with Parkinson’s Disease
  • Kirsty Bannister, Senior Lecturer and Principal Investigator at the Institute of Psychiatry, Psychology & Neuroscience, Kings College London.

More information:


With thanks to:

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Rethinking long-term pain management

To listen to this programme, please click here.

This edition of Airing Pain has been supported with a grant from Kyowa Kirin donated for this purpose. 

The opioid crisis reached its peak in the United States in 2017, where addiction and overprescription have led to 218,000 deaths from prescription overdoses between the years of 1999 and 2017. The side effects of opioids can affect the day-to-day activities of people managing long-term or chronic pain, yet society as a whole has yet to fully evaluate the relationship between opioids and addiction.  

In this edition of Airing Pain, producer Paul Evans talks to two leading pain specialists. First off, Paul Evans meets with Dr Srinivasa Raja, who discusses opioids effects on the body’s opioid receptors and how the human body processes pain. Dr Cathy Stannard then talks about the increase of opioid prescriptions in the UK and how the opioid crisis in the United Kingdom developed. 

In the second half of the programme, Paul speaks with Louise Trewern, a chronic pain patient and patient advocate, about opioids’ detrimental effect on her quality of life and how she was able to transition towards more effective methods of chronic pain management. 

Finally, Paul sits down with Dr Jim Huddy, a GP in Cornwall, who explains how the medical community is re-evaluating the relationship between opioids and chronic pain. 

Issues covered in this programme include: Cancer, chemotherapy, exercise, fibromyalgia, medication, neuropathic pain, opioids, painkillers, physiotherapy, prescription for pain, psychology, side effects and dosage.

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 and for those who care for us. I’m Paul Evans and this edition of Airing Pain has been supported with a grant from Kyowa Kirin.

Louise Trewern: Hyperalgesia was one of my biggest problems. I couldn’t have dental treatment properly. I had to have multiple injections because they couldn’t numb me. It was gradually, over a period of months, suggested to me that the dose I was on was not helping me, it was making me worse, and that a lot of the symptoms I was suffering [from] was as a result of my opioid use.

Evans: In this edition of Airing Pain, I want to look at the use of opioid medication for the management of chronic pain. The so-called opioid crisis or opioid epidemic in America came to a head in 2017 when, contrary to the reassurances of pharmaceutical manufacturers that patients were less likely to become addicted and an aggressive marketing campaign, addiction, overdose and death rates soared.

Before we delve into how this affected people with chronic pain in the UK, I want to try and come to grips with some of the science behind the drugs and how they work. Now opiates are naturally derived from the opium poppy plant. They include morphine, codeine, heroin, and others, and have been used for medicinal and recreational purposes since prehistoric times. Opioids, on the other hand, which include tramadol, methadone, pethidine, fentanyl, and others, was originally coined to denote synthetically sourced opiate-like medicines, but confusingly to me anyway, the term opioids is now used to also include the naturally-derived opiates. So, for the sake of clarity, an opioid is a compound that acts on opioid receptors in the body. So, what’s an opioid receptor? Professor Srinivasa Raja of Johns Hopkins School of Medicine, Baltimore, in the United States is internationally recognised for his research into neuropathic pain.

Srinivasa Raja: One of the scientists and neuroscientists, Solomon Snyder, worked on this in the 60s, and he asked what now looks like a very straightforward and simple question. He knew and most of us, physicians or healthcare providers, know that drugs such as morphine work well in treating pain, particularly things like pain after surgery. So, the question he said [asked] is: ‘There must be something in the body that should be the site where these drugs are working’. And he found these receptors called opioid receptors, and he found that they were present in multiple areas not only in the brain, but [also] in the spinal cord and other sites. You know, one of the questions is ‘What is the role of these receptors?’. Are they there only for drugs given by physicians to work in the human nervous system? So, you know, the question he asked is: ‘What is the role of these receptors in the body?’. And he came to the understanding that there are endogenous pain control mechanisms, that the body has a way to control pain. And, often, the good example given is athletes who are in the middle of a game – a World Cup – and, you know, can be injured but continue to play and don’t perceive the pain till the end of the game when they find something that they hurt themselves. There was a good example of a US gymnast who did her last jump with a fractured ankle. It wasn’t found until after that. So, I think that the body, especially at times of stress, releases endorphins or these endogenous opioid peptides, which then work on these receptors to control pain. So, I think it’s a protective mechanism that fortunately most of us have.

Evans: It’s fairly common for top class athletes and football players, rugby players, whoever to go through what they call the pain barrier. Why are they more capable of doing that than say, the man or woman in the street?

Raja: Wow, that’s a challenging question. And I think the answer to that is complex in the sense that the pain experience is a very personal thing and, given the same injury, different individuals perceive the pain differently in terms of intensity and emotional aspects of it. I think [that] as far as the athletes [are concerned], there may be two reasons. One, there may be a bit of training, you know, prior experiences, saying that this injury usually lasts for a few days, I’ll be better and, you know, I need to move on. They go through these repeated injuries, maybe there is a bit of adaptation to that injury. So, they don’t experience the pain in the same way. The other aspect is, it’s interesting how people talk about motivation and the result of the pain and how you react to the pain may have some implications for an athlete. You know, if he exhibits pain, he may be pulled out of the game and maybe he doesn’t want to do that. Similarly, we noticed that given similar injuries in a developing world, people move on because what that means to them is loss of their day’s work, you know, if they don’t go to work, they don’t get paid.

Evans: They don’t have the option of giving up.

Raja: Exactly. They don’t have the option. They may be experiencing the pain, but how they react to that pain experience may be very different.

Evans: Now, there are people who don’t experience pain. Is there a relationship between that and the opioid receptors?

Raja: The most common type of absence of pain or that group of patients that have been well studied is not necessarily from opioid receptors, but more so from a specific sodium channel that signals pain. But there are mutations of the opioid receptor that have been observed and reported in humans. The implications there have been that how these patients may respond to opioid medications may be different, and their pain experience after things like surgery may also be different.

Evans: We’ve just had an interesting case in the news recently of a woman who can’t experience pain. She only knows when her hand is on the hot plate of the cooker because she can smell it burning, but also, she experiences no anxiety.

Raja: That’s an interesting observation. And it tells us that these receptor systems in the nervous system are often not having a single role. They often have multiple roles and they are multiple sites. And this is the challenging part of basic science and the translation of basic science to clinical new drug development. A very good example of that: there was a lot of work done on what’s now known as the chilli pepper or hot pepper receptor – the TRPV channels. These channels are well characterised and drugs were effective – antagonists or drugs that block these receptors are very effective in animal models of pain – so much so that it did go all the way up to clinical trials. What was observed in these clinical trials was that these animals developed hyperthermia or increase in body temperature. And this was totally unanticipated from the earlier studies in experimental animals. Subsequent studies found that not only do these TRPV-1 receptors or channels are involved in pain signalling, but they’re also involved in thermal regulation or regulation of body temperature. So, when you block these receptors, you do have effects on pain, but you also have an undesired effect on body temperature.

Evans: Professor Srinivasa Raja of Johns Hopkins School of Medicine, Baltimore, in the United States. With the American opioid crisis coming to a head in 2017, The Times newspaper warned that ‘the UK is hurtling towards a US style crisis’ where super strength painkillers have killed more than 91,000 people in the past two years. Now, to be clear, NHS guidance says that opioids are very good analgesics for acute pain and pain at the end of life, but there’s little evidence that they’re helpful for long-term pain. Despite this, they were widely prescribed for long-term or chronic pain. Opioid prescribing more than doubled in the period 1998 to 2018. Dr Cathy Stannard is a leading pain medicine specialist now working with the NHS Gloucestershire Clinical Commissioning Group. She is an internationally-recognised expert on aspects of pain management and opioid therapy in particular.

Cathy Stannard: It is a fact that pain and pain prescribing has this almost unique position where people are left on medicines even if they still have pain. So, if we treat somebody for blood pressure, and they come back and their blood pressure is still high, we do something else. If somebody is in pain, and they come back and the pain medicines aren’t working, we either put up the dose or just leave patients on it. And it’s very understandable that patients, who are taking medicines but not observing much in the way of pain relief, would make the not unrealistic assumption that if they reduce their medicines the pain would be worse. We know that’s not the case. And often people can feel better and more alert and shed side effects when they’re supported to come off medicines. But if you’re in a very short, pressured medicines use review, if you’re not reporting active adverse side effects, it’s our experience that nobody will have had a conversation as to precisely how well those medicines are doing what they say on the tin. And, actually, that’s where the results are often disappointing. So, it’s not something that can be resolved with a superficial, you know, what’s this medicine doing? What are the side effects? It is much more complex about the way that the medicines are working for that patient.

Evans: The way these things are communicated to patients is often interpreted in completely the wrong way. The opioids are being taken away from me. I’m now a drug addict. I’m criminalised. Maybe the press is at fault, maybe we’re at fault. How do you communicate these things? The problems the patients are feeling?

Stannard: I think that’s really important. And there’s been a huge frenzy of variable quality reporting, particularly around the opioid issues at the moment. And there’s an undoubted public health disaster of biblical proportions in the United States, initiated by people taking opioid medicines for pain and now moving on to various illicit substances. I think there are lots of protective factors about our own healthcare system in the UK and I think it’s unhelpful to make quick decisions on the basis of what we see at a United States population level. I think it is important to communicate, with people using these medicines, what we’re trying to achieve. And the most important message to get across is that we do not want to expose people to the harms of medicines that aren’t working,

Evans: How to get it over, you know, this isn’t doing you any good, you will be better, taking fewer drugs.

Stannard: It’s not that easy and nobody finds it easy to have that conversation. I think it’s about bringing people to that realisation themselves. So, when I assess a patient, I will spend maybe half an hour talking about the patient, what life is like for that patient living with their pain, what limitations that pain brings. Then we get onto the medicines’ history. And you know, they may be on several medicines and I kind of will say to the patient: ‘You said how difficult your pain is and you’re taking these medicines, do you think the medicines are making much difference?’ And there is a dawning realisation that it’s just like taking Smarties – is something that we commonly hear. We know that patients are fearful of reducing because of course, if your pain is bad and you’re on medicines, what if it’s worse? It’s very difficult and it depends on the individual’s perceptions and so on. But we do have evidence from a huge number of patient reports that, freed from the many burdens and side effects, people feel much more alert, able to engage with their families and engage themselves in strategies which help manage their pain. So, we know that most of the medicines that we prescribed for pain which actually stop the way that nerves talk to other nerves do have side effects which make people sleepy, sedated, giddy and so on. And all those things make it very difficult to start trying to manage people’s lives to try and mitigate the effects of long-term pain. It is more about the balance of benefits and harms and it’s more about getting people to reflect how well they think the medicines are supporting them, which is often that they’re not.

Evans: Dr Cathy Stannard. Louise Trewern has lived with pain for most of her adult life. She was prescribed opioids for over twelve years and was the first inpatient at Newton Abbot Hospital in Devon to come off them.

Trewern: The day before I went into hospital, I had clocked up something like twenty-five steps on my pedometer, probably that was from the bed to my chair, the chair to the bathroom and then back to bed. And I was touching twenty-five stones in weight, and my life was pretty non-existent by this point. I’d been on opioids for over twelve years – high dose. And it was suggested over a period of time that I needed to come off this medication because, in actual fact, it wasn’t helping me.

Evans: How was it put to you that you should stop?

Trewern: It was gradually, over a period of months, suggested to me that the dose I was on was not helping me, it was making me worse. And a lot of the symptoms I was suffering was as a result of my opioid use. And I definitely – hyperalgesia was one of my biggest problems. I couldn’t have dental treatment properly. I had to have multiple injections because it couldn’t numb me. I couldn’t have the cats walk over my legs, because the pain was intense. And then I suffered a couple of quite severe medical episodes, which meant I was an emergency   admission to hospital, which met the criteria to have me in and get me off these opioids. My initial week in hospital was where I came— they halved my dose overnight and the doctor said to me that, in the morning, your pain will not be any worse, I can guarantee that and I had to put my trust in him and it was true. It wasn’t worse. Since then, we’re talking two years now, I’ve lost seven stones in weight. I know walk up to five miles a day. I still live with pain on a daily basis, but I deal with it without medication apart from perhaps a couple of paracetamol.

Evans: Louise Trewern. Jim Huddy is a GP. He is Cornwall Clinical Commissioning Group Clinical Lead for Chronic Pain.

Huddy: Cornwall has always been a heavy prescriber of opioid analgesics for pain and that is not a good thing because we know that the higher levels of opioids in a population, then that is associated with, well to cut a long story short, higher levels of misery. So, we really wanted to bring that level down. A lot of people talk about reducing doses and it is really important to put out there that there are some people who are on the right dose for them and we really don’t want to be taking away drugs that work for people, but what we think from the medical side is that the vast proportion of people with chronic pain who are on opioid medications, those medications probably aren’t working very well. And, more importantly, if they were on a much lower dose or possibly even off the drugs, then not only would they feel better but their lives would get better. So, that’s why there is a big emphasis on this. It’s not purely a money-saving exercise although it does save a lot of money which we can then sort of put into other directions which is quite exciting, but it really, honestly, and science does back this up, but a lot of the time people don’t feel any worse or a lot of people talk about getting their lives back, and that’s particularly if they are on very high doses. The Faculty of Pain Medicine have put out what I describe as a ‘national speed limit of dose’ and that is 120mg of morphine and over this dose the science is clear that this is going to be more damaging than good for you. So, that group of patients who might be on 200, 500, maybe even up to 1000mg of morphine per day are very likely to be more harmed than benefited by that. But the problem with those drugs is that they have effects on the mind and the body that make the mind and body need their doses each day. And the idea of reducing or stopping the drug is so scary for patients that, very often, they don’t believe that that’s in their best interest. So, it’s a very interesting and challenging consultation, where sometimes the doctor and the patient have very opposing views, but we have got some expert patients that are helping us and, actually, we’ve got a video from NHS England that’s about to be released of one of our patients called Sean, and there’s a little bit of me on this video, that tells Sean’s story. It’s only a three- or four-minute little bite that could be watched in consultations and Sean’s absolutely engaging with explaining his sort of epiphany of life could be better without these strong drugs. And now he’s not on the strong drugs and he’s back on his jet-ski. It’s a great story. And that’s why we believe a lot of people out there would have better lives if they’re deprescribed their medication.

Evans: It’s a conundrum, isn’t it? The fact that people are on these higher doses of opioids prescribed by their doctors. Did that last one work? No, have a bit more, have a bit more again, have a bit more again. So, doctor has said this is good for me. And now doctor’s saying it’s not good for me?

Huddy: Yes.

Evans: How do you square that circle?

Huddy: Yes. Well, the way I explain it to patients is that, you know, medical and medical understanding, medical beliefs are an ever-changing field and for various reasons, which aren’t very sort of wholesome or particularly nice. I think over the last ten, twenty, thirty years pain specialists were led to believe by drug companies that if you give high enough doses of opioid medications, you will get people pain free, and it’s their right to be pain free. And this was when I was at medical school in the mid-90s. This is what was taught to us the WHO analgesic ladder, you keep going up the ladder until you get someone pain free. And we all believed that that was the way to go. We now don’t believe that. We now kind of know from the science that the data that that was based on was flawed, let’s put it politely. And, more recently, we’re getting research that is showing that, just as you described, when you start these medications very often there is a, there’s a temporary benefit that then wears off. So, then, you have a dose increase and there’s a temporary benefit which then wears off and, just as you described, people get on higher and higher doses and sometimes some very, very high doses. Now what’s really tricky is that when you do the reverse process, the reverse process happens. So, when you drop the dose, their pain gets worse for a bit, and then it goes back to the baseline, and then you drop the dose again, and the pain gets worse. So, we are embarking on a treatment schedule which might, you know, go on for six, nine or twelve months. It has to be done slowly and the patient has to realise that, you know, there is a bit of a storm coming, this isn’t going to be an easy ride. But the benefits at the end of it, if you talk to the patients who’ve done it, are worth that pain. But for a doctor to be suggesting a management approach for the next few months that’s going to be painful for you is quite a tricky one. That’s not what we’re trained to do. And it is a complex and quite challenging consultation that I certainly haven’t mastered. I’m, you know, trying to perfect it and some patients are more up for it than others, but they do have to believe and we do believe that having alternatives to make things easier during this process is a really important part, which is why we’re emphasising alternatives to pills at the moment.

Evans: That’s GP Jim Huddy. Louise Trewern, having been the first inpatient to come off opioids at Newton Abbot Hospital in Devon, is now working with a doctor to help her to help others reduce or give up their opioid use for the management of their chronic pain.

Trewern: I am working with the doctors that helped me come off the opioids and back twelve months after that because I needed that long to recover as it were. I’ve been working with them, and it’s a multidisciplinary group, on a committee called the Rational Use of Opioids. So, I’m helping the team make patient leaflets and videos for the website, this is in Torbay, for proper use of opioids, which will hopefully help those that don’t seek help and those that do, inpatient and outpatient leaflets. So, because the things I experienced, both before and after, are not all in the journals, they’re not, it’s not all written down. Some things they’ve heard about, but they didn’t know for sure that it was happening. And it’s not just me. There’re several patients now in Torbay that they’ve helped since and it’s just that I was the first inpatient that they did this with. So whereby certain things they thought would happen, they’re now going to put this in a warning in the leaflet. You know, if you come off opioids too quickly, this could happen. And we’ve been told this happens and not necessarily to everybody but it, it can happen, just so that people are aware of the dangers. You can’t just stop these drugs, but not everybody knows this. So, they’re taking my experience plus, putting it together with the medical side and physical therapy. All the different areas are coming together to make these leaflets that will be circulated in GP surgeries and on the website. And so yeah, it is working. And I’m sure with Torbay, it’s not just in this with opioids, it’s with other things as well. And so yeah, it’s hopeful that, that will continue and it needs to be countrywide, I think.

Evans: So rather than like the leaflets we get in all our packs of medicines and tablets, they list all the everything that could happen to you and more. These are coming from your voice. This is, this has happened to me. And this is what can happen after.

Trewern: That’s it and one of the key things that we’ve gone out of our way to make sure of is that, between the team, the language is what can be understood by the person taking those opioids.

Evans: Louise Trewern and there is information on the use and withdrawal of opioid medication at Torbay and South Devon NHS Trust Pain Services website. I just entered the words ‘Devon’, ‘pain’ and ‘service’ into my search engine to get me there. In neighbouring Cornwall, where Jim Huddy is a GP, the overprescribing of opioids has come down by 18% in three years.

Huddy: An 18% reduction is a much bigger reduction than most of the CCGs in the UK and we assume that a large part of that is because of the work that we’ve done.

Evans: So, what has brought that down?

Huddy: Some of this is assumption and some of this is hope. But we also think that some of it is logical, that a lot of our work has been based around GP education, and GP education that the way to deal with someone who’s got chronic pain is not to just reach straight for the prescription pad, which is our tendency as doctors because that’s kind of how we’re trained. We decided to write some information for patients and write information for doctors, and we did that, and it was all brilliant, and we published it on one of our websites, and no one read it because it was long-winded and everyone’s busy. At that point, we thought, okay, we need to rethink this. So, we decided to move in a direction of video education. So, we’ve now made three videos, mainly for prescribers, really, we’re going to move on from that in time. But the videos that we’ve got, one is about sort of safe opioid prescribing, one is about safe deprescribing of opioids. It’s quite a sort of chunky thing. It’s about half hour of like me narrating a PowerPoint presentation about identifying what patients might be right for deprescribing and how to engage them and how to do it safely and how to support them during it and also consultation skills and practice-based strategies. How to make yourself more robust against patients that might be quite keen on continuing their doses, let’s say. Then the third video that we’ve done more recently is entitled ‘If I don’t prescribe, what do I do?’, which starts introducing ideas of how to talk about self-management as a strategy for chronic pain, moving away from pills and tools, the alternatives. We split up the rest of the video into twelve mini-sections because if you suffer from chronic pain, Frances Cole’s work has suggested to us that there are twelve consequences of chronic pain, you’re very likely to be suffering from one or maybe all of them – things like physical inactivity, social isolation, sleeplessness, emotional problems, relationship problems, work-related problems, and there are twelve of these things. So, we’ve split up the rest of the video just going through each of those one by one and giving the doctors ideas of what can be done and, more crucially, on our website, we’ve got written information for patients which is in electronic format. It’s kind of crude because our website is kind of crude and basic, and that’s something that we want to work on. We slightly sort of grandiosely called it ‘Chronic Pain – The Answers’ and it goes through each of these twelve consequences of pain and gives the reader just things that we’ve cobbled together from online stuff and Cornwall-based stuff of what would be relevant to sleep for example, or to emotional stuff or ‘boom and bust’ stuff, the stuff that you, you know all about, but trying to bring it all together into one place.

Evans: Jim Huddy, Cornwall Clinical Commissioning Group Clinical Lead for Chronic Pain. Now the website address for those resources is a bit of a mouthful. So, I suggest you put ‘opioid prescribing for chronic pain Cornwall’ into your search engine. It’s well worth a visit. As always, I’ll just remind you that, whilst we in Pain Concern believe the information and opinions on Airing Pain are accurate and sound, based on the best judgments available, you should always consult your health professional on any matter relating to your health and well-being. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf. You can find all the resources to support the management of chronic pain including details of our helpline, videos, leaflets, all editions of Airing Pain and Pain Matters magazine at painconcern.org.uk. Now, last words of this edition of Airing Pain to Louise Trewern about her journey with opioids,

Trewern: I’m choosing not to be upset about it, because I think the doctors at the time that prescribed it were working with the information they had at the time. Now, of course, we know that long-term use of opioids doesn’t help chronic pain conditions at all. And so, I’m trying to get the message out there that there are other ways of coping with your pain other than just taking painkillers.


Contributors:

  • Dr Srinivasa Raja, Professor of Anaesthesiology and Critical Care Medicine and Neurology at the Johns Hopkins University School of Medicine, Maryland, USA  
  • Dr Cathy Stannard, Consultant in Pain Medicine and Pain Transformation Programme Clinical Lead for NHS Gloucestershire Clinical Commissioning Group 
  • Louise Trewern, Vice Chair of the Patient Voice Committee at the British Pain Society 
  • Dr Jim Huddy, Cornwall GP and Clinical Lead for Chronic Pain at NHS Kernow Clinical Commissioning Group. 

More information:


With thanks to:

  • The British Pain Society (BPS), who facilitated the interviews at their Annual Scientific Meeting in 2019 – britishpainsociety.org
  • The International Association for the Study of Pain (IASP) iasp-pain.org.

Transcription by Nathalie Johnstone

Managing neuropathic pain related to diabetes, and how to adapt diet to treat the disease

This edition of Airing Pain has been supported by a grant from The Champ Trust and Foundation Scotland.

According to the most recent Scottish Diabetes Survey in 2018, there are an estimated 304,000 people living with a diagnosis of diabetes in Scotland, around 5% of the population. A long-term effect of diabetes can be the development of diabetic neuropathy. This edition of Airing Pain focuses on neuropathic pain in people with diabetes, and how the X-PERT diabetes courses helps people to deal with the complications that arise when living with diabetes.

First up, Paul Evans speaks to David Bennett, Professor of Neurology at the University of Oxford, who outlines the differences between type 1 and type 2 diabetes and how the initial treatment plan differs between the types. Professor Bennett then goes on to describe how neuropathy develops in people living with diabetes and how neuropathic pain manifests.

Paul then talks with Steve Sims, who lives with diabetic neuropathy as a result of type 2 diabetes. Paul and Steve discuss how they have adjusted their diets to deal with type 2 diabetes and how the X-PERT diabetes course has helped them to adjust to living with diabetes.

Issues covered in this programme include: Diabetes, the differences between type one and type two diabetes, diabetic neuropathy, diabetic retinopathy, nutrition, diet, insulin levels, glycemic control, risk factors of diabetes, peripheral vascular disease, foot pain, burning pain, gabapentinoids, and support groups.


Contributors:

  • Professor Dave Bennett, Professor of Neurology, Nuffield Department of Clinical Neurosciences, University of Oxford
  • Steve Sims, Secretary, Cardiff Diabetes Group.

More information:


With thanks to:

  • The British Pain Society (BPS), who facilitated the interviews at their Annual Scientific Meeting in 2019 – britishpainsociety.org
  • The International Association for the Study of Pain (IASP) – iasp-pain.org
  • Diabetes UK, a leading UK charity that involves sharing knowledge on diabetes – diabetes.org.uk/.

Discussing the future of chronic pain services across Wales

This edition of Airing Pain has been partially funded by an educational grant from Grünenthal Limited, donated for this purpose.

In April 2019, the Minister for Health and Social Services in Wales launched the guidance document Living with Persistent Pain in Wales. Later, in December, the Chronic Pain Policy Coalition brought together some of Wales’s leading pain experts at the home of the Welsh parliament (or Senedd Cymru) in Cardiff, at an event chaired by Neil Betteridge, co-chair of the Chronic Pain Policy Coalition, a group which brings together a wide range of chronic pain stakeholders including professional bodies, patient organisations, parliamentarians and industry representatives from across the UK.

This edition of Airing Pain was recorded live at the event, where clinicians, academics, policy-makers and people living with pain came together to discuss both the new document and the future of chronic pain services across the region.

With thanks to the Chronic Pain Policy Coalition, the Welsh Government and the conference organisers for facilitating the recording of this event.

Issues covered in this programme include: Arthritis, availability of pain services, education, equality, exercise, fatigue, fibromyalgia, chronic primary pain, funding of pain services, GP, opioids, osteoarthritis, physiotherapy, policy, referral scheme, rheumatology, society, policy, visibility and Welsh government.


Contributors:

  • Neil Betteridge, Co-Chair, Chronic Pain Policy Coalition
  • Dr Paul Cameron, Specialty Advisor to the Chief Medical Officer for Scotland
  • Professor Ernest Choy, Head of Rheumatology, Cardiff University
  • Mary Cowern, Wales Director, Versus Arthritis
  • David Easton, Physiotherapist, Hywel Da NHS Trust
  • Dr Lucy Morris, GP partner, Bellevue Practice, Newport
  • Professor Ann Taylor, Professor in Medical Education, Cardiff University.

More information:


How we prevent, manage and diagnose this ‘silent disease’

This edition of Airing Pain has been supported by a grant from The D’Oyly Carte Charitable Trust.

Osteoporosis is a largely ignored condition that affects over 3 million people in the UK, with women being more at risk; a condition which, because the symptoms are difficult to notice by patients, is often referred to as the ‘silent disease’. In this edition of Airing Pain, we learn why prevention, assessment and management are key factors to deal with this condition and develop a correct model of care in the health services.

First-off, Paul Evans speaks to Dr Emma Clark, Consultant in Rheumatology & Osteoporosis at North Bristol Trust, to find out about the causes and characteristics of osteoporosis. She discusses how osteoporosis can be ignored or misdiagnosed as osteoarthritis, as well as ways in which we can look after our bone health. Dr Clark also talks about how she is currently developing a clinical tool for primary care professionals to help them identify signs of osteoporosis when they meet with their patients.

Paul also speaks to Sarah Leyland, Nurse Consultant at the Royal Osteoporosis Society, about the new focus on prevention, mainly in terms of lifestyle changes and developing a model of care designed to identify people who are at higher risk of osteoporotic fractures. She also describes the range of physical exercises she has developed to reduce the risk of fractures and help with pain after fractures.

Issues covered in this programme include: Fractures, bone health, osteoporosis, osteoporosis prevention, osteoporosis symptoms, risk of fractures, spinal fracture, aging, elderly people, vertebral fracture, vertical fracture and weak bones.


Contributors:

  • Dr Emma Clark, Rheumatology & Osteoporosis Consultant at North Bristol NHS Trust
  • Sarah Leyland, Osteoporosis Nurse Consultant at the Royal Osteoporosis Society.

More information:

Looking at the side effects of opioids for chronic pain management

This edition of Airing Pain has been funded by an educational grant from Kyowa Kirin.

While opioids are seen as an effective treatment method for acute pain, there is an increasing debate on the efficacy of opioids when treating chronic pain conditions. One of the most common side effects of long-term opioid usage is constipation. Conditions like irritable bowel syndrome are more common in people who are living with chronic pain conditions, so better understanding of the connection between opioids and constipation is key for medical professionals currently working with chronic pain patients.

Following on from Airing Pain 123, this edition sees Paul Evans speaks to Dr Maria Eugenicos, who is a gastroenterologist at the University of Edinburgh. Dr Eugenicos starts by outlining the different conditions that are treated at her gastro-intestinal clinic and how these conditions can present. Dr Eugenicos then discusses the prevalence of opioid-induced constipation in clinical patients and how shifting treatment methods and properly educating patients on their conditions can help to improve their standard of living.

Issues covered in this programme include: Opioids, abdominal pain, amitriptyline, bowels, constipation, side effects, fatigue, fibromyalgia, IBS: irritable bowel syndrome, neuromodulators, painkillers, pelvic pain, stomach pain, stool and tricyclic antidepressants.


Contributors:

  • Dr Maria Eugenicos, Senior Lecturer/Gastroenterologist at the Western General Hospital Gastroenterology Department, University of Edinburgh
  • Dr Cathy Stannard, Consultant in Pain Medicine and Pain Transformation Programme Clinical Lead for NHS Gloucestershire Clinical Commissioning Group.

More information:


With thanks to:

  • Maggie’s Centre, a resource network designed to help cancer patients and their families – maggies.org.

Our new issue, Pain Matters 76, is published today, Monday 7 September

What do we mean when we talk about pain?

In this edition of Pain Matters, we have invited the members of the Flippin’ Pain™ campaign to guest-edit a pain neuroscience education special. A public health campaign delivered by Connect Health, Flippin’ Pain aims to improve health literacy around persistent pain, building on the work done by world-renowned pain scientist and science educator Professor Lorimer Moseley.

As Professor Cormac Ryan says, ‘for over half a century, much of what scientists have learned about pain has remained hidden away in academic journals gathering dust’, unobtainable to the people who need it most: the people who live with pain every day. This edition of Pain Matters, along with the Flippin’ Pain campaign, aims to change this, one step at a time.

Buy or subscribe at painconcern.org.uk/product-category/pain-matters/.

Or why not try our digital version, available at pocketmags.com/pain-matters-magazine.

We are delighted to announce that our popular booklet on neuropathic pain has been revised and reprinted, thanks to an award from Foundation Scotland.

The booklet, originally written by Dr John Lee, has been revised and updated by Dr Alan Fayaz, Consultant in Chronic Pain Medicine, Anaesthesia and Perioperative Care at the University College London Hospitals NHS Trust.

This booklet starts by addressing the causes of neuropathic pain, from the more common causes, such as nerve damage and entrapment, diabetes or post-herpetic neuralgia (pain after shingles); to less common causes, such as trigeminal neuralgia (a form of facial pain), multiple sclerosis, phantom limb pain or pain related to cancer or cancer treatment.

There is an extensive section on the drug treatments available for people with neuropathic pain, and why standard painkillers, such as paracetamol, non-steroidal anti-inflammatory drugs (NSAIDs) (e.g. ibuprofen) and simple opioid drugs (e.g. codeine) are often not effective in treating neuropathic pain. In some cases, antidepressants like amitriptyline and antiepileptics like those in the gabapentinoid family (such as gabapentin and pregabalin) are prescribed instead, as they are found to be more effective in a lot of cases. This revised booklet does, however, mention the recent law classification changes to gabapentin and pregabalin, which are a common treatment for people with neuropathic pain, and how these changes might affect the people who find these drugs effective. This was a subject Pain Concern delved into more deeply in programme 114 of Airing Pain, ‘You, Your Drugs, and the Law: Gabapentinoids & Medicinal Cannabis’, also funded by the Foundation Scotland grant.

The final section of the booklet studies non-drug treatments for neuropathic pain. Many people with neuropathic pain find standard pain management techniques are not as applicable to their pain (a subject which Tina from livingwellpain.net goes into in a lot of detail in the issue 73 of Pain Matters magazine). Drs Lee and Fayaz look at pain self-management techniques for people with neuropathic pain, as well as other non-drug treatments such as physiotherapy, pain management programmes and stimulation procedures like TENS (transcutaneous electrical nerve stimulation) and PENS (percutaneous electrical nerve stimulation), where an electrical signal is used to stimulate the nerves.

The revised leaflet has been published on our website and we welcome your comments. We are extremely grateful to the Trigeminal Neuralgia Association UK and the Shingles Support Society for their support and collaboration in the publication of this leaflet.

You can read the full leaflet here.

We are delighted here at Pain Matters HQ to have the neuropathic pain team from University College London Hospital Pain Management Centre guest-editing issue 73. This edition of the magazine takes an in-depth look at all aspects of neuropathic pain, from what it is to how best to manage and treat it, taking in points of view from those living with it to the healthcare professionals trying to help them.

Also in issue 73, writer Robert Ilson describes his half-century struggle to find an answer to his facial pain, including all the treatments – traditional and not – gone by the wayside, before concluding that, sometimes, ‘living with pain can become a way of coping with pain’.

Out Now!

To buy or subscribe, click here

Involving patients in researching their own condition – it seems logical, so why is it not more common? 

To listen to the programme, please click here.

This edition was facilitated by the British Pain Society and recorded at their Annual Scientific Meeting 2019.

In this edition of Airing Pain, Paul Evans investigates the potential for patients to play an integral role in research, alongside the professionals. Through discussions with patients John and Mark, both of whom are part of research groups, he sheds light on the importance of patients shaping the research and treatment of their own condition. From patients being included in directing their own treatment plan to actually influencing the direction of original scientific research, there are many benefits to their involvement.

Louise Trewern, a member of the BPS Patient Liaison Committee, speaks of her journey from coming off opioids to working with doctors in order to help others in similar situations. She highlights the need to break down the ‘language’ barrier between professionals and patients.

Margaret Whitehead and Julie Ashworth explore how the BPS and the University of Keele, respectively, are encouraging patient involvement. Specifically, Julie talks about the University of Keele’s efforts to improve primary care with their programme PROMPPT.

Finally, Paul discusses the future work required to challenge the ‘doctor knows better’ attitude excluding patients from influencing the treatment of their condition for future generations.

Issues covered in this programme include: Opioids, educating healthcare professionals, fibromyalgia, research, patient voice, patient involvement, peer support, placebo, social media, epidemiology, Twitter and volunteering.


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 and for healthcare professionals. I’m Paul Evans.

Margaret Whitehead: It is a paradigm shift in the way that research will develop. And we have to see it as a long journey – ten, twenty, thirty years, before everybody’s adopted – I hope it’s not that long. What we’re trying to raise is what it could be like and how do we plot that path to get there. So there’s a very small number of people at the moment involved in it. But, increasingly, there are people who are skilled at involving patients and mediating, really, between the scientists and the patients. At some point in the future it will be [that] everybody’s talking the same language.

Evans: In the previous edition of Airing Pain [116 – available here], I talked to leading international scientists about their ground-breaking research into neuropathic pain. In this edition I want to turn the tables, so to speak, and move the spotlight on to what patients themselves can contribute, not as subjects or guinea pigs to be studied, but as integral members of the research team. Now it is recognised that involving patients as research partners has a significant impact not only on improving the methodology and research outcomes but gives credibility to the results and, let’s face it, in terms of ethics, patients should have a say in decisions that will impact on their daily lives. So, in this year’s British Pain Society Annual Scientific Meeting, a group of patients spoke to delegates about their role as research partners. It was chaired by former Co-Chair of the British Pain Society’s Patient Liaison Committee, Margaret Whitehead, and I spoke to her, along with fellow patients who had taken part in the session, Louise Trewern, Mark Farmer and John Norton. John first:

John Norton: I have long experience of being a patient representative in north-west London. We founded a group as long ago as six years ago, really to do with working towards integration of Health and Social Care, which we are still working towards and we’ll hopefully get there.

In the course of that I got the opportunity to join Imperial’s, what’s called the Patient Safety Translational Research Centre – [catchy] – yeah, now there’s a name for you. I was very privileged to do that – a wonderful group of about a dozen patients and carers from a variety of different backgrounds, and we worked over two years with, probably by now, about twenty researchers, helping them to organise their research with patients and public in mind and, more than in mind, directly involved in the planning and the carrying out of the research. And I find that a very rewarding, very rewarding activity.

Evans: When I saw the talk about involving patients in research I thought, well there is no research without patients, that’s the whole point of research.

Norton: That’s a fully understandable reaction but it was pointed out today that there are two sides to patients being involved in the research – those who are suitable to be participants in the research, as what I would loosely call ‘guinea pigs’ [with] research being carried out on them. But the growing thing, and the thing that is now mostly required to obtain grants for research, is that patients should be involved in a sense at the other end – in the planning and the organisation – to help the researcher carry out their research in a patient-centred and patient-sensitive way. And I think that distinction, I’m sure, is still going to confuse matters for some time yet, that your reaction to it is a very natural one. We probably, mostly sensibly, have to point that out, that there is that distinction. I mean, I have been, when I had an incipient cataract many years ago, I was in a research project for a drug by a rather well-known drug company. I’m pretty certain I was taking the placebo because it did nothing for my cataract but a surgeon did happily after that [laughter]. But I delayed having the operation for about five years to be in the research. But now I’m the other end of things and, happily, I’m well, even though way, way beyond my allotted span in this life and trying to put what I have left to use for the benefit of the next generation or the one after which is what research is really about.

Evans: Sitting next to John is Mark.

Mark Farmer: Yes, I’m Mark. I suffer from fibromyalgia, arthritis and hemiplegic migraines, which have been very disabling. I’m more of a fan of medication than some people are because I think it has helped me a lot, actually, to be able to live a sum of a life – I’d put it that way. I also sit on a number of local NHS bodies like Healthwatch, I’m a member of, and the reason I am mentioning that is because we are the statutory body for patient representation in every local area and that’s our legal power that we have. And we get lots of reports about how patients are not really properly involved with research. But, most worryingly, with that kind of treatment plan, there’s still too much of ‘the doctor knows better than the patient’ rather than it being a, you know, fifty-fifty partnership: ‘here’s a toolkit that you could use as a patient’. And I think that’s what concerns me on a national level, is that we need to push that message out a bit more about what concerns people have around pain at a local level.

Louise Trewern: I’m Louise Trewern and I’m part of the Patient Liaison Committee – new member really. I became involved through my story with opioids because two years ago I was the first in-patient to come off opioids at Newton Abbot Hospital and, since then, it’s completely altered my life – drastically.

Evans: How do you mean it changed your life when you came off opioids?

Trewern: Drastically – and the day before I went in to hospital to come off I had clocked up something like twenty-five steps on my pedometer, probably that was from the bed to my chair, the chair to the bathroom and then back to bed. And I was touching twenty-five stone in weight and my life was pretty non-existent by this point. I’d been on opioids for over twelve years – high dose.

It was suggested over a period of time that I needed to come off this medication because, in actual fact, it wasn’t helping me – which took a long time for the message to get through. And then I suffered a couple of quite severe medical episodes which meant I was an emergency admission to hospital – which met the criteria to have me in and get me off these opioids. Since then, we’re talking two years now, I’ve lost seven stone in weight, I now walk up to five miles a day, still live with pain on a daily basis, but I deal with it without medication, apart from perhaps a couple of paracetamol. And so I’m trying to get the message out there that there are other ways, not for everybody, but there are other ways of coping with your pain other than just taking painkillers.

Evans: Louise – are you involved in research?

Trewern: I am working with the doctors that helped me come off the opioids. About twelve months after that, because I needed that long to recover as it were. I’ve been working with a multidisciplinary group on a committee called the Rational Use of Opioids. I’m helping the team make patient leaflets and videos for the website, this is in Torbay, for proper use of opioids, which will hopefully help those that don’t seek help – and those that do – in-patient and out-patient leaflets. So they’re in Torbay and we are lucky because I don’t think it’s across the country yet. But Torbay really are engaging, or trying to engage, with patients. They are taking my experience, plus putting it together with the medical side and physiotherapy – all the different areas are coming together to make these leaflets that will be circulated in GP surgeries and on the website. And so, yeah, it is working. And I’m sure, with Torbay, it’s not just in this with opioids it’s with other things as well. And so, yeah, it’s hopeful that that will continue and it needs to be countrywide I think.

Evans: So, when you ceased opioid use, how was it put to you that you should stop?

Trewern: It was gradually, over a period of months, suggested to me that the dose I was on was not helping me – it was making me worse. And that a lot of the symptoms I was suffering [were] as a result of my opioid use. And definitely hyperalgesia was one of my biggest problems. I couldn’t have dental treatment properly. I had to have multiple injections because they couldn’t numb me. I couldn’t have the cats walk over my legs because the pain was intense. And all this gradually ceased after I came off the opioids.

Evans: How was that experience used to help others?

Trewern: My initial week in hospital was where I came, they halved my dose overnight, and the doctor said to me that ‘in the morning your pain will not be any worse, I can guarantee that’ and I had to put my trust in him and it was true. It wasn’t worse. The things I experienced, both before and after, are not all in the journals. It’s not all written down. Some things they’ve heard about but they didn’t know for sure that it was happening. And it’s not just me, there’s several patients now in Torbay that they’ve helped since and it’s just that I was the first in-patient that they did this with. So, whereby certain things they thought would happen they’re now going to put this in a warning in the leaflet. You know, ‘if you come off opioids too quickly this could happen’. And ‘we’ve been told this happens and not necessarily to everybody but it can happen’. Just so that people are aware of the dangers – you can’t just stop these drugs – but not everybody knows this.

Evans: So – rather than like the leaflets that we get in all our packs of medicines and tablets that list all the … everything that could happen to you and more, at least it’s coming from your voice ‘this has happened to me and this is what can happen after’.

Trewern: Yes that’s it. And one of the key things that we’ve gone out of our way to make sure of is that, between the team, the language is what can be understood by the person taking those opioids.

Norton: That’s great. Your group has been a research project in itself, but it’s going to benefit other people. I mean, what can be better? Patient-led, patient-experienced, patient-communicated. Fantastic. [Laughter]

Evans: Margaret, what can the British Pain Society do to encourage this? How could patients get involved in research projects themselves?

Whitehead: Well, the British Pain Society is looking at facilitating a ‘network’, I suppose, of patients who might become involved in pain research. Obviously, we don’t want to trip over other things that are happening because there will be research units like Imperial and at University College and all over the country who will also be doing this – growing this network of patients who offer support and are available. It is a priority for them. It’s really how to take it forward and this is what the Patient Liaison Committee will be prioritising, we hope, in the next couple of years. It will take time. What the British Pain Society is looking for is patients who are interested in the work of the British Pain Society to sign up to the reference group and get involved in the Patient Liaison Committee. And then, in due course, there will be a research network – a panel of patients, with particular types of pain – who will either get involved themselves or will use their networks of other patients to help get them involved in research. But this is happening all over the country in all sorts of organisations.

Evans: That’s Margaret Whitehead, former Co-Chair of the British Pain Society’s Patient Liaison Committee.

Well, one organisation that’s currently, current that is in the Autumn of 2019, looking for people to take part in an important research study is the University of Keele. They’re looking to recruit people who live with long-term pain or care for someone who does. People who have experience of using medicines for long-term pain now or in the past and who’d like to share their experience and views to take part in a study to help understand how clinical pharmacists working in GP surgeries can help improve care for patients with long-term pain. Julie Ashworth is a senior lecturer at the University of Keele and an honorary consultant in the Community Pain Service with the Midlands Partnership Foundation Trust. And the study goes under the heading PROMPPT.

Julie Ashworth: PROMPPT is an acronym that has a very long title behind it. So it is ‘Proactive Review of Patients taking Long-term Opioid Medicines for Persistent Pain led by Clinical Pharmacists in Primary Care Teams’. And out of all that we’ve picked a few capitals to give us a nice catchy…

Evans: Honestly there’s no need that’s very, very clear [laughter].

Ashworth: Our aim is to try and improve care for people with long-term pain, persistent pain, chronic pain – all the different names that are given to it because we know that most of these patients are managed in primary care. Most drugs are prescribed in primary care. Even if that’s not where they were started that’s where they continued. And we know that a lot of people continue on drugs that aren’t really helping them, but may be causing them harm, because they don’t know what else to do. Often they’re not reviewed as, perhaps, the guidelines say they should be because the opportunity doesn’t arise or there isn’t time in a routine consultation – often people with long-term pain have lots of other problems. It’s sometimes difficult to discuss all of the pain medicines in a routine appointment. So our idea is that we don’t need more guidelines. We kind of know what we should be doing. We need to do it.

And so to do it we need somebody who’s got the time, the skills, the expertise to do that and we need to know what we should be doing as well. So what would people who are struggling living with long-term pain, who take lots of drugs that maybe aren’t helping very much, what would they want from their GP practice in terms of review? What would they want that to be like, I guess. We need to find that out first of all. So the research I’m involved in is a five-year programme. And the first year is all about finding that out. So we have interviews with patients, we have interviews with clinical pharmacists as well. And we have interviews with GPs because we need to know what clinical pharmacists think they might need in terms of training to make them be able to do this. Alongside that we’re going to have a slightly novel way of doing research with an online research blog. And that’s going to be called the Q PROMPPT Blog. And, basically, that’s going to be an online discussion forum which we set up just for the research – just for twelve weeks. And, in a way, it will be like having twelve focus groups but with an online group of people. And the reason for doing that is it allows us to get the views of a much wider range of people including the sort of people that don’t often volunteer to take part in individual interviews or maybe they can’t, maybe they have other responsibilities that they have to take care of. So it hopefully will allow us to just check that the sorts of things we hear from patients who will come and talk to us on a one to one basis are the main issues for other people.

Evans: Just explain to me what you mean by a blog?

Ashworth: I’m also learning a lot from my younger and more technically-minded colleagues. Essentially, it’s like a discussion forum, like Facebook, where you can post a comment and then someone can reply. And the idea would be that to get a conversation going we will have an area of the research that we’re interested in finding more about. We will put out a short video presentation, setting the scene if you like, and asking a question or two to get the conversation started and then we’ll ask people to share their views, their experiences, tell us what they think. There will be researchers supervising the whole process. So moderating, if you like, but also chipping in, if needs be, to keep the conversation going, or following up with a question if someone says something really interesting. We’ll try and keep each discussion focused around one area but then move on to another area. Some of the areas we know for sure the sorts of things we’re going to be discussing now, but some of them may arise out of the discussions. So if the people in the blog say things that we find are really interesting, that we hadn’t thought perhaps were so important, then we can create a whole topic about that to follow up on it. So we’ll leave that flexibility for the end.

Evans: One thing that occurs to me, and I might have given the game away by saying ‘what is a blog’, is that a certain generation who have chronic pain do not use social media.

Ashworth: We explored this with our research users’ group – many of whom are from that very generation. It was true – they found that they weren’t particularly social media-minded or were a little bit wary. But what they found was if they were led to it from a trusted source, so that might be something like the Pain Concern website, it might be the University’s research page – then they were comfortable with it if it came from, say, the NHS in some way. So they were okay with that. And we work with them on our plans for the advertising campaign for recruitment, so that’s one area. But we know there will be some people that don’t want to take part in online research but we are having individual interviews as well. And we will be looking at other work that’s been done by other people. We will pull it all together and then take the whole picture. So the online research is about confirming findings in a much wider population – it’s not a standalone thing.

Evans: So it’s setting the agenda in many ways?

Ashworth: Yes, yeah. And it will help us. What we’ll do is take the information to a stakeholder group, which is comprising lots of different healthcare professionals who have some relevant experience, but also patients with relevant experience of pain. We’ll take those findings along with the literature and the guidelines. And it will give us this picture that allows us to decide how we should structure clinical pharmacists reviewing these patients, what sort of training would need to happen. And then there are other stages to the development, so we’ll test it out with some willing clinical pharmacists that we will recruit – a small number in three different GP practices – and some real patients to do observed reviews and learn from that and then improve things with each stage of testing. And we’ll also do some focus groups with clinical pharmacists just to find out a little bit more about the training needs.

Evans: So it’s a five year project – Q PROMPPT?

Ashworth: Q PROMPPT is four studies – one of which is the Blog. It includes the interviews, individual interviews, the blog, the in-practice testing –with the small number of pharmacists and patients and the clinical pharmacists’ focus groups – and we’ve put these four things together and call them the Q PROMPPT study.

Evans: Will they get to meet each other face to face at some point?

Ashworth: The patients on the blog? No, it’s all anonymous. And we’ve done that because [of] the feedback we got from our research users’ group, that was something that would make them feel more comfortable about joining in, but also because we don’t want to keep people’s personal data with this blog. So they will sign up with an email address, but they won’t have to give their real name, and their email address will just stay with the website administrator. And at the end of the twelve weeks all of that data will be deleted and it won’t exist anymore. And all we will get is an anonymised transcript. There is a personal messaging system where they can contact the website administrator but it’s not like Facebook where you can get to know new friends.

Evans: What are you looking for at the moment?

Ashworth: What we would like to have is that people are aware that we are looking at this area of research and that we are really interested in the views of people with pain. And if they were to follow us on Twitter, if they do that sort of thing, or look at our website, www.promppt.co.uk, that’s PROMPPT with three Ps – so P-R-O-M-P-P-T. The Twitter is @keelepain. If they follow us on there then they’ll find out, from the horse’s mouth as it were, when we’re ready to go live with this blog and they can be in right from the start. But even if they don’t pick it up right at the start they will be able to go back and join in all the initial discussions later. So really we want people to understand what we’re doing and then they’ll be able to follow the progress of our research through the website for the five years and to the point where we get our results.

Evans: That’s Julie Ashworth of the University of Keele. And that website again is promppt.co.uk. And PROMPPT, as Julie says, has three Ps and is spelled P-R-O-M-P-P-T – promppt.co.uk. And the Twitter address is @keelepain and Keele is spelled K-E-E-L-E.

John Norton, of the British Pain Society Patients as Research Partners Group:

Norton: The other thing which is growing is patients initiating what the research should be. I’m certainly involved with one new project which is in the digital world, which is founded on that idea that patients actually are going to be involved in co-creating, or whatever you’d like to call it, the actual subjects that are going to be researched and I think that’s a development. Margaret, would you agree that’s a development that I think we’re hopefully going to see more of?

Whitehead: Absolutely. So the ideas don’t just come from professionals, they will still come from professionals as well, but from patients, and in every area of pain there needs to be more research and that’s where the patients’ organisations themselves have a massive role. It’s the patients’ organisations who already have that network of those people living with that particular type of pain. They are a group of people who could really accelerate this change by talking to their members – ‘where do you think the research needs to be?’. I think there’s an open door as long as there’s some money behind all this because money is required to involve patients properly in research and for it not just be ‘come along to a meeting.’ and then because people come along to a meeting they feel that box is ticked – it has to be involvement at every stage – a lot of it will be.

Another point is about language: ‘I’ve been involved in an application for a grant’ is professional speak. They’re talking a completely different language. And a patient goes in and really is disempowered by feeling really quite stupid. Even though the professional knows that that’s not the case but you feel, ‘I can’t say what I want to say because I really don’t understand what they’re talking about and I’ll just sound silly, and it’s probably best if I keep quiet’ and that’s the role of patient researchers a lot. I don’t know if you’ve found that John, is going at the very beginning saying, ‘well that doesn’t really make sense’. And if you give that to a patient they’ll just say ‘Oh okay, because you’re the professional, it must be okay’. But, in fact, they do want to know a lot more. And it’s just the way that the information is communicated so having patients at the very beginning, going through everything, going through the lay summary – but not just that – going through everything that’s involved in the research, and also advising them on the amount of time that patients may want. So just because a researcher will understand their area completely, they may well be the world expert in this particular field, and think that they can send something to a patient and expect them to turn it around within a week. So that’s where the patient thing can come in.

Norton: I think there’s no doubt that if patients and professionals are going to work successfully together that they have to speak a language that both can understand and scientific terms – you know – it’s only recently, very strange, amazing, I’m sure you probably all saw this, it is only within the last six months or so that doctors were told by the GMC or the BMAF, or whatever, that they had to write to their patients in language that the patients would understand. It’s just … just … that’s almost amazing isn’t it really [laughter].

Evans: This seems like a good time to remind you of our small print that whilst 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. He or she is the only person who knows you and your circumstances and, therefore, the appropriate action to take on your behalf. So, to end this edition of Airing Pain on ‘Patients as Research Partners’ – does it have a future, other stumbling blocks and what is needed to provide a good future for it?

Margaret Whitehead and John Norton. Margaret first:

Whitehead: It’s the beginning of a long journey. It’s very difficult for everybody to conceptualise it, it is a paradigm shift in the way that research will develop. And we have to see it as a long journey – ten, twenty, thirty years – before everybody’s adopted. I hope it’s not that long. But it could be because that’s how long these shifts in the way of thinking take to really embed themselves.

So it’s absolutely true that there’s a lot of, let’s say it’s tokenism, because involving patients, the people who do it really think they’re involving patients but they don’t necessarily know how to do it. And because they’re so busy, and there’s so many other pressures on their time, it’s not been done as well as it could be. So not the right language, not the right support, etc. What we’re trying to raise is what it could be like and how do we plot that path to get there?

There’s a very small number of people at the moment involved in it but, increasingly, there are people who are skilled at involving patients and mediating, really, between the scientists and the patients. And it shouldn’t really need mediation but, at some point in the future, it will be everybody’s talking the same language.

Evans: How important is it that you know how you’ve contributed to that research project?

Norton: To me, greatly important. I don’t like wasting my time. And I like to feel that I’m doing somebody else some good but, in saying that, for any of this patient participation, lay partnership and getting involved in whatever project in the medical world, it is equally important that it’s doing good for you yourself. There’s no harm, indeed I think there’s every merit, in having a modicum of selfish motive in getting involved in volunteering work that helps one feel satisfied. It’s very important to feel satisfied about what you’re doing but what you’re referring to, about knowing about the outcomes, is an important part of that satisfaction as well. I think my colleagues would agree. It gets you out of bed in the morning doesn’t it?  

Evans: I always think of it, as a research project comes up – well in twenty years’ time this will be fine, but I won’t be here in twenty years’ time, I don’t think, but you have to think of it in another way as well – twenty years ago the research was being done that is making me feel a little bit better now. [General agreement]

Norton: I think of my first great granddaughter who was born in April. I think of her generation. That’s where the benefit is. It doesn’t worry me, and I think most of the people who get involved in this, by and large, are not worried that it’s not for them that they’re doing this. It will help them in various ways of course but, essentially, the research is not for their benefit. It’s for those down the line and I think we get satisfaction from feeling that we’re pushing something that is going to help in the future.


Contributors:

  • John Norton, patient
  • Mark Farmer, patient
  • Louise Trewern, member of the BPS Patient Liaison Committee
  • Margaret Whitehead, past co-chair of the BPS Patient Liaison Committee
  • Julie Ashworth, Senior Lecturer University of Keele and Honorary Consultant at the Community Pain Service with Midlands Partnership Foundation Trust.

More information:

Rethinking long-term pain management

This edition of Airing Pain has been supported with a grant from Kyowa Kirin donated for this purpose. 

The opioid crisis reached its peak in the United States in 2017, where addiction and overprescription have led to 218,000 deaths from prescription overdoses between the years of 1999 and 2017. The side effects of opioids can affect the day-to-day activities of people managing long-term or chronic pain, yet society as a whole has yet to fully evaluate the relationship between opioids and addiction.  

In this edition of Airing Pain, producer Paul Evans talks to two leading pain specialists. First off, Paul Evans meets with Dr Srinivasa Raja, who discusses opioids effects on the body’s opioid receptors and how the human body processes pain. Dr Cathy Stannard then talks about the increase of opioid prescriptions in the UK and how the opioid crisis in the United Kingdom developed. 

In the second half of the programmePaul speaks with Louise Trewern, a chronic pain patient and patient advocateabout opioids detrimental effect on her quality of life and how she was able to transition towards more effective methods of chronic pain management. 

Finally, Paul sits down with Dr Jim Huddy, a GP in Cornwall, who explains how the medical community is re-evaluating the relationship between opioids and chronic pain. 

Issues covered in this programme include: Cancer, chemotherapy, exercise, fibromyalgia, medication, neuropathic pain, opioids, painkillers, physiotherapy, prescription for pain, psychology, side effects and dosage.


Contributors:

  • Dr Srinivasa Raja, Professor of Anaesthesiology and Critical Care Medicine and Neurology at the Johns Hopkins University School of Medicine, Maryland, USA  
  • Dr Cathy Stannard, Consultant in Pain Medicine and Pain Transformation Programme Clinical Lead for NHS Gloucestershire Clinical Commissioning Group 
  • Louise Trewern, Vice Chair of the Patient Voice Committee at the British Pain Society 
  • Dr Jim Huddy, Cornwall GP and Clinical Lead for Chronic Pain at NHS Kernow Clinical Commissioning Group. 

More information:


With thanks to:

  • The British Pain Society (BPS), who facilitated the interviews at their Annual Scientific Meeting in 2019 – britishpainsociety.org
  • The International Association for the Study of Pain (IASP) iasp-pain.org.
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