Pain Concern

In this 100^th edition of Airing Pain, Paul Evans speaks to Heather Wallace, creator and driving force behind the Airing Pain radio programmes, who discusses the inspiration that led to the programme and its continued importance for Pain Concern and the chronic pain community

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Paul also attends a Glasgow Pain Education Session and meets Angela O’Neil and Georgina McDonald, two Pain Education Session Trainer Volunteers, as well as a number of attendees to the Pain Education Sessions, and finds how regular, community-based education sessions can help sufferers of chronic pain deal with pacing and self-management.

Lyn Watson, a Clinical Nurse Specialist in Pain Management Programmes for NHS Greater Glasgow and Clyde, discusses the role healthcare professionals can play in encouraging chronic pain sufferers to attend community education sessions like the ones in Glasgow.

Claire Mitchell, a Clinical Health Psychology Student at Strathclyde University, and a Pain Education Session Trainer Volunteer, explains how time management and good sleep practice has helped with her own chronic pain.

Issues covered in this programme include: Chronic fatigue, chronic primary pain, educating healthcare professionals, endometriosis, flare-up, insomnia, neck pain, pace, pacing, pelvic pain, psychological effects of pain, radio programme, rehabilitation programme, science of pain, sleep, stiffness, support group and workshops.

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 health care professionals. I’m Paul Evans, and this is a special edition – a landmark edition of Airing Pain because we’ve reached our century. Yes, this is the 100^th programme since it was launched way back in 2010!

And like everything that’s been achieved over the years by Pain Concern, it owes its success to a brainwave, but also the dogged persistence, conviction and the tireless, selfless hard work of Heather Wallace.

Heather Wallace: Pain Concern started as a support group for people who had done a 12-week pain management rehabilitation programme. The people knew how to manage their pain, what they had to do in their lives – the changes they had to make – to manage their pain well. And we were asked to run a support group to help them maintain these skills and keep them motivated.

And we very quickly realised that it was very hard for people to get to support group meetings when they were dealing with pain. Either they were housebound with their pain or if they were trying to go to work they were coming home so tired that they had no energy to go out yet again to a support group. So one of the things that led us to think about doing a radio programme was, ‘how do we make it easier for people to get to support, given that so few were managing to make the support group meetings?’ Although the feedback we got from them was, ‘please, do it!’

And then it got the point that people were asking us to record the meetings because they couldn’t come to them. So at that point we started to think that maybe, if we used media, we could reach more people. And we won first prize in the NAPS awards for chronic pain for the concept of a radio programme – and that allowed us to start to look for a professional producer who could help us do that, and introductions via a pain consultant who knew somebody who was working with the BBC, who knew you, Paul – and that’s how you and I eventually had our very first phone call discussing this concept.

Evans: Well I can remember that very first phone call. I had just left the BBC because my own long-term condition had made doing my job very, very difficult. The last thing I wanted was to make another radio programme. So when I had this phone call from this mad woman in Edinburgh [laughter] who wanted to start making radio programmes about chronic pain I did not know how to react. I thought, ‘well, OK, we’ll give this a go for two or three [episodes] and then she will realise that it’s just too difficult to do. But that didn’t happen.’

Wallace: It’s interesting because you didn’t tell me you were thinking that. But from people who had any experience in radio [we were told] ‘you won’t really know what you’re doing and you’re going to find it’s far more difficult than you think.’ But you were really instrumental in making it a success. You’ve flung everything into making really good quality radio programmes and that was the inspiration to keep them going. That, and the fact that the majority of pain is managed in primary care by doctors and nurses and other health care professionals who have very little training in chronic pain, who don’t understand it – who don’t understand how people need to self-manage their pain, to manage flare-ups, and so on.

So, you know, one of the visions behind it was to allow people who couldn’t get access to specialist care to hear from top specialists about how to manage that pain, and also patients who were benefitting from specialist care, and were managing to put things into practice. So you took that on.

Evans: But the eye-opener to me was that once I’d started doing this, and once you’d introduced me to all these specialists and people who genuinely knew about chronic pain and could help people, it was an absolute eye-opener that all this information as there. And having been managed for a good 15-20 years plus, this information was there, but nobody had told me anything about it.

Wallace: That’s right. I mean, for the first 11 years of my life with pain – and I was very disabled by my pain – I had no help at all. And what made me really motivated to drive it forward as much as I could was the difference that actual access to a pain specialist had made to my life, and the turnaround. And then realising with excitement that there was a whole pool of knowledge there that could help people in this very difficult situation – dealing with this very difficult condition.

You know, it really was almost criminal that this wasn’t better known to the many, many people whose lives were blighted every day by experience of pain. Once we opened that door it was really hard to close it again, I think.

Evans: Lots of the stuff is not rocket science. The self-management approach: that may have been suggested to me, but put over in the way that, ‘listen, there’s nothing we can do for you: get on with it by yourself. Self-manage yourself.’

Wallace: That’s right. ‘Go away and don’t bother us in the surgery any more because, you know, you’ve had as many medications as we can give you, they’re not helping your pain, you’ll just have to go and live with it.’ And the key to that is being able to tell people, ‘well, this is how you live with it.’ There is a way of managing this effectively that will let you have a life – not without pain, but at least where the pain isn’t dominating every minute of your day and influencing all the choices you make. People talk about getting their life back.

Evans: When I asked you what we should be doing for this hundredth programme, you immediately said, ‘the Glasgow Pain Education Sessions: that is what we are proud of.’

Wallace: Yes. The clinical psychologist in charge of the pain management programme in Glasgow, Martin Dunbar, is a very smart guy, and he runs a really good team of people. And they had a discussion about the future direction they should take: should it be in, sort of, getting involved in highly specialised pain management services, which help just a small handful of people; or should it be much more about getting pain management into the community? And let’s face it, it’s about preventing people’s families from breaking up because of pain; helping people stay at work. So they made the decision to widen access in the community, and they did a pilot search project in West Dunbartonshire looking at the role the pharmacist could play in helping people manage their pain and also these pain education sessions.

So he and his team are the brains behind this, and they invited Pain Concern to be involved because they felt that we also were sympathetic to that approach.

Evans: That’s Heather Wallace, the driving force and human dynamo behind Pain Concern.

So, the Glasgow Community Pain Education sessions are currently run across six venues across Glasgow. They’re for anyone who has had pain for more than 12 weeks, and the aim is to give a better understanding of pain and how to manage it more effectively in the long term. The two-hour sessions are delivered, not by healthcare professionals, but by trainers who have chronic pain themselves. The sessions cover the science of pain, how to manage activity, stress, sleep and flare-ups of pain. So, they’re an introduction to help people develop ways of dealing with pain, to be able to do more and to enjoy life more.

The session I attended was in Eastwood and that’s to the south of Glasgow.

Angela O’Neil [leading an education session]: …My name’s Angela O’Neil and I’ve got chronic pain. I’m a volunteer for the NHS and for Pain Concern, which is a charity. This is just a one-off, two-hour session, and I take it you’ve all had pain for longer than 12 weeks. A lot longer? Yeah, this is what we usually find – it might be a lot of years. So we’ll get on because we’ve got a very busy session, we’ve got a lot of information to impart. I’m not here to advise you, just to give you information about pain and what pain is.

So, Pain Concern’s a UK charity. It started in Edinburgh as a self-help group but it’s gone on now to education, it’s very much into education people what pain is – not just patients, but the medical profession as well. Because people don’t understand pain, I don’t know if you’ve found that when you’ve gone to the GP and things – that that little 10-minute window you’ve got with them, it doesn’t always cover what you want to say about your pain and they don’t always appreciate the full impact that pain has on your life, would you say? It impinges on everything, doesn’t it? …

O’Neil [in conversation with Evans]: I had 11 operations in a year; they didn’t really know what was wrong and why I wasn’t getting any better, and eventually they ruled everything out and said that it was chronic pain, and there was nothing they could do. And that was 12 years ago.

Evans: How did you feel when they said, ‘there’s nothing more that we can do?’

O’Neil: I was absolutely devastated. I didn’t believe it, I was still looking for a cure. I couldn’t accept that there was nothing more that they could do. I was on the internet looking for information; I was trying to find different cures; I was talking to different people, asking questions about different drugs. I really could not accept that there was nothing they could do for me.

And I think I now accept that there’s no cure available. I wouldn’t ever lose hope that one day somebody would take my pain away, but now I do much more myself to put my pain in perspective and live as normal a life as I can.

Evans: Explain that – what do you mean by ‘putting pain into perspective’?

O’Neil: I’ve learnt to accept that my pain’s there, but there are things that I can do to make my pain easier. I’ve got lots of strategies in my bag now – or in my toolbox – to use when my pain’s at its worst, and to carry on doing the things that I should do every day. And I’m much more positive in my outlook on life. And I’m now helping others to use these tools and learn about the strategies and educating people in pain, and that also helps me with my pain as it gets me out – doing things, meeting people.

Evans: What are some of the strategies that you use?

O’Neil: Pace has been exceptionally good for me. There were things that I thought I’d never be able to do again and by pacing I’ve managed to be able to swim again, which I never thought I could do. I now walk – I pace my walking up and I can now walk 10 kilometers, and I couldn’t walk to the end of the street two years ago. I’ve paced my reading; paced my concentration; paced my ability to sit and concentrate for longer.

I think people that come along to the sessions, and seeing that we actually suffer pain and hearing our stories and similarities between them and us, that it gets the message home a lot better.

Georgina McDonald [leading an education session]: …If anyone needs to stand up and stretch please feel free to do so, you’ll find often go walk about – not out the door for a coffee [laughter] – but we do try to move about.

I often say that when you see these two words together they don’t really go together, do they: pain and activity? And you, probably, like me, will have reduced your activity…’

McDonald [in conversation with Evans]: My name is Georgina McDonald and I suffer with chronic pain, but I am a pain trainer with Pain Concern, working alongside our colleagues and other pain trainers who have been trained to deliver the information evenings.

Evans: So what did the training [needed] to deliver one of these sessions involve?

McDonald: Well, originally, because I had chronic pain I was referred to the pain management team and underwent a 10-week course of pain management. I had had an accident a number of years ago and after years of chronic pain I was offered this resource which I found to be particularly helpful in my situation. At the end of the 10-week course I was asked if I was interested I becoming a pain trainer, which was still in its early stages at that point, and I then underwent training with the pain management team – two-day intensive training – then was monitored and helped by them before we were let loose with patients and people who came to the information evening.

Evans: I presume part of the training was keeping you on-message?

McDonald: Yes, very much so. We have very strict guidelines as to the fact that we’re giving information and not advice. We’re giving out how we have been helped by the pain management strategies which we are giving information about, and we’re also letting those who have come to the sessions know how helpful we have found different aspects of that course – and especially things like pacing, which I had never really heard about before or hadn’t taken on board. That’s one of the things I find most helpful and we do stress that in the two-hour session we do here.

Evans: Pacing is one of the easiest things to explain and one of the hardest things to do.

McDonald: The whole concept of pacing is that you build up your activity to the point where you don’t have extra pain, or don’t have the pain increasing, in your activities. So anybody with chronic pain has background pain which is there all the time – and I certainly have a lot of sensitization in my legs, so therefore I can have additional pain from that. But when you’re building up and you’re using pacing then you start getting to a level which is comfortable for you, and if you start to feel additional pain then you know that you have to go back to that comfortable level and try increasing the activity again perhaps the next day or the next week.

Evans: But the games the mind plays – when you’ve come to that comfortable level, the mind sometimes will say, ‘maybe I’ll do a bit more.’

McDonald: Yes, and I think that’s human nature, that you try to push on. And I think that’s on of the things I think we try to get over through these sessions is that you have this either boom-and-bust or you have this ‘pushing on’ scenario where, on good days, you want to do so much – whether it be the garden, golfing, cleaning, whatever – or pushing on, which I tended to do when I was working. I tried to dismiss the fact that I was really not able to do the level of activity that I was undertaking at that time and so was incurring further pain, which, perhaps if I had known about pacing at the time, it might have prevented even having to stop work when I did.

My GP is exceptionally good and she’s very helpful and supportive, but what I’ve learnt through the pain management course has helped me to structure my life and to get my life back together again.

Evans: Had you been to one of these sessions that you’re running tonight at the very beginning, how different do you think your pain journey would have been?

McDonald: My pain journey would have been totally different. I do have to say that. I’ve spoken to my GP about this and she has referred people to these sessions because she knows, I think, and I know that I would have benefitted so greatly from this at the beginning. The activity planning, the pacing, the knowing when to stop, when to be more active, how to address your medication – I think I would have had a far better understanding of my body and the pain journey, although there’s still lots to learn. I would have had a better understanding.

Britney: I’m Britney, I’m 24 and I deal with chronic neck pain mostly. I’ve also been going through surgeries for endometriosis and chronic pelvic pains – kind of a mixed bag of the high and the low [laughs].

Evans: You’ve got the works? You’ve got the whole lot!

Britney: Yes [laughs]. Yeah, I guess it’s kind of learning to – one of them is an older thing to deal with and one of them is new, so trying to find the right balance of things that worked with me with my neck and things that now can help me with the pelvic pain; I’ve been trying to find a good balance.

Evans: So why have you come here today?

Britney: I guess to kind of work on that, exactly: to just kind of find out what would be the most beneficial way to keep moving forward with work and school and getting married soon and, you know, just trying to maintain healthy relationships and a health life while, you know, not letting the pain bog me down or put me on bed rest too much.

Evans: So far, what have you learnt?

Britney: So far I’ve learnt the pacing method – I’ve been able to not take on everything at once. I have a tendency to stockpile my weekdays during business hours and then it makes for a pretty awful evening [laughs], awful weekends. So I’m trying to make sure that I can enjoy time with friends and things as well as my work.

Evans: I was quite interested in what Georgina was saying about if you are planning for some big event, don’t plan not to do that, but take the day after as a recovery day.

Britney: I think that that’s a really good strategy, because what I’ve run into is sometimes I’ll have multiple events booked out day after day after day, but then if I have a flare-up then all of a sudden it’s like my entire week’s plans have just gone out the window. I’m leading up to a few big events so if I can now plan to take it gradually, leading up to that, rather than just trying to pack everything in then that may work better than what I’ve been doing.

Evans: If there’s just one message you’d take out of today – there’s more messages to come, I know that just one message, pacing – which I find very difficult, actually, but very worthwhile. That’s a great thing to take away.

Britney: Yes, absolutely. Pacing definitely so far has been what stands out and what I’ll take away.

Claire Mitchell: My name’s Claire Mitchell, I’m a student at Strathclyde University and I help to deliver these sessions for Pain Concern as part of my placement for my clinical health psychology masters.

Evans: And what part are you going to deliver?

Mitchell: The ‘stress and pain’ talk and ‘pain and sleep.’ And I also suffer from chronic pain as well.

Evans: Can you tell me something about your chronic pain?

Mitchell: Well I have ME so it’s chronic fatigue and also pain in all my muscles.

Evans: How does that affect you?

Mitchell: It affects my mobility and it cognitively – my thinking, you know, you forget your words [laughs]. Your brain just does not function at the same capacity as it usually would. Concentration is low, you get stiff, you have to move around a lot.

Evans: When did you start having your ME?

Mitchell: When I started university, so five years ago.

Evans: So how did you cope with university and ME?

Mitchell: It’s mostly about time management and working with what you can, and accepting that you have limits and you have to stick to them. You have to manage your time affectively.

Evans: It’s a form of pacing, isn’t it?

Mitchell: Yeah, it is, I guess.

Evans: So how does taking part in these classes help with your condition?

Mitchell: For me particularly the information on sleep really helped me, because you’re kept up at night from your pain. And for me I would spend a lot of time just lying in bed, I haven’t slept, and I cant do anything so I’m just going to stay in bed anyway and try and catch up on sleep. But, really, what’s important is establishing a routine and not lying in bed all the time [laughs] because you can’t catch up on your sleep – you know, it’s not like a bank.

Esther McFarlane: I’m Esther McFarlane, retired for the last 10 years, nurse for 40 years. As my pain began to increase I began to shift my job.

Evans: So what brought you to this pain education class tonight?

McFarlane: It’s really interesting to know the changes that have taken place in pain management and pain education and pain knowledge since I taught it about 20 years ago or something.

Evans: Ah, so you taught it pain management? So how has it changed?

McFarlane: I mean, most of the things have changed but what’s got me is the fact that now they accept that chronic pain is [actually] there, and that it’s different to acute pain. Because chronic pain used to be, ‘oh it’s just neurotic,’ you know? And it used to frustrate me, that idea; people would say that about folk.

Evans: It’s all up there in the head?

McFarlane: Yeah. Aye, that used to really frustrate me. And it’s quite good to hear that there is evidence to show that persistent pain is different from acute pain, and it’s not just something that’s in your head; it’s to do with neuroreceptors and things like that, which is really quite interesting. It’s great for folk that are, you know, stepping out on that road of having chronic pain, it’s good to know that people are going to listen to them now.

Evans: But is there stuff you’re learning today – learning about in this session – that will help you with your pain?

McFarlane: Yes. So many times you’re really not good to yourself. So many times you start to think, ‘maybe I am making this up.’ What I’ve learnt tonight is that, no, it is there. You deal with it, you know – I suppose it’s acceptance. Acceptance that you have it, and deal with it in a sensible way, instead of sort of pushing your own boundaries all the time.

Lyn Watson: My name is Lyn Watson and I’m a clinical nurse specialist who works within the pain management programme in Greater Glasgow and Clyde.

Evans: This is bringing pain education into the community, rather than taking the community into the hospitals, if you like?

Watson: Absolutely. What we discovered within Glasgow, in line with the Scottish Service Model for [Chronic] Pain, [was that] we were quite well served within Glasgow at some of the levels for education within the service, but that’s what we call level 1 service, which was education and information for people within the community. There wasn’t really any service available at that time, and so as part of the pilot that was what we looked at.

Evans: And what’s the take-up like of these sessions?

Watson: [In] some areas the take-up has been really good; however, some of the areas it’s perhaps still not as well-attended as we would like. And I think that can be for various reasons. We’re certainly looking within the service and, more importantly, though Pain Concern, at how we can allow it to become more accessible for people; that people know about it; that people are encouraged to attend, perhaps by the professionals that they might see in relation to their pain.

Evans: It’s one thing to advertise them; it’s another thing to convince people that this is the sort of thing that will help them.

Watson: Absolutely, and I think there is certainly a role for us, as professionals, to play in that. I certainly think that it is given more validity if, say, a person’s GP, practice nurse, physiotherapist et cetera is encouraging people to go along to it, then I think that makes it more valid – that the information they’re getting is going to be suitable for them, it’s going to be appropriate for them.

Evans: But the primary care, I guess the GPs have to buy into the scheme?

Watson: Yes, and that has probably been a struggle. There are huge pressures on all primary care services. Obviously I work at the other end of people’s pain journey – that sort of level 4 commitment, which is a pain management programme, and what people time and time again say to us within that service is, ‘I wish I had known this before.’ And that was something we were hearing regularly.

And I think it is invaluable to give people that confidence to realise that there are things that they can do themselves, and manage themselves, and empower them to make choices themselves.

McDonald: I think, certainly in the west of Scotland, we’ve been brought up with that almost Calvinistic attitude that you don’t matter, that we have to think about everybody else and that we aren’t really important. But actually, you are important, and you have to – as Angela said – pat yourself on the back when you achieve something, and you have to do what is good for you. And so in self-managing, as well as the medication, it means that you take control of some aspects of your chronic pain to try and help yourself, so that you’re not relying on absolutely everybody else.

And I think Angela said at the very beginning of today: one in six people have chronic pain, so we are not alone. Lots of people have chronic pain, and we hope that this evening have been a help to you on your journey.

Evans: You can find out more about the Glasgow Community Education Sessions from Pain Concern’s website which is www.painconcern.org.uk. As always, I have to read you the 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 wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf.

Don’t forget that you can download all 100 editions of Airing Pain for Pain Concern’s website which is once again www.painconcern.org.uk. And you’ll also find on the website Pain Concern’s extensive resources to support living with chronic pain.

Well this 100^th edition of Airing Pain – or the previous 99 – would not have happened without the vision and dogged persistence of Heather Wallace, so she can have the last words.

Wallace: There’s no doubt when we’ve done evaluations of Airing Pain that for some people it has had a major role in their getting their life back. The other thing is, I mean, why do we keep doing it? Why don’t we just a set of videos or radio programmes explaining self-management and then cut people loose to just get on with it? It is about the role of support groups – people need constant reminders. Because you have to do this every single day of your life: that’s tough, and people get demotivated. Incidents in their life come into play – maybe a family crisis or something – and they forget about their self-management skills and then they get a flare-up.

So it’s about keeping people motivated, keeping people on-track. And if they get flare-ups, realising ‘oh yeah, I understand why this has happened; let’s get back to managing the pain better.’ And I think having a regular source of support like Airing Pain does help people do that.

Evans: So from that very, very strange phone conversation from seven or eight years ago, there are now 50 hours of broadcasts about pain and self-management and how to live with conditions. And all I can do is thank you for how it’s helped me and thousands and thousands of other people.

Wallace: And I would say it’s helped me too. You know, there’s always new knowledge to learn about how to refine the way you’re managing your pain; there’s new science coming forward. So I hope that in another few years’ time we will be sitting down celebrating the 200^th radio programme. Yeah.

Evans: I’ll take you up on that.

Wallace: Ok, good!

Contributors:

Heather Wallace – Founder of Pain Concern
Angela O’Neil – Pain Education Session Trainer Volunteer for NHS and Pain Concern
Georgina McDonald – Pain Education Session Trainer Volunteer
Britney – Pain Education Session Attendee
Claire Mitchell – Clinical Health Psychology Student at Strathclyde University and Pain Education Session Trainer Volunteer
Esther McFarlane – Pain Education Session Attendee and Ex Pain Management Nurse
Lyn Watson – Clinical Nurse Specialist in Pain Management Programme for NHS Greater Glasgow and Clyde.

More information:

Pain Concern’s Glasgow based Pain Education Sessions: painconcern.org.uk/how-we-help/pain-education-sessions-glasgow/.

Exploring the challenges and successes that patients, parents and healthcare professionals encounter when pain in adolescents

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This edition was funded by a grant by the Agnes Hunter Trust

Going through adolescence can be a difficult process for anyone, but for young adults with chronic pain the difficulties of these formative years can become multifaceted. With 8% of young people in the 13-18 age range affected by chronic pain (15,000 living with arthritis alone), the transition to adulthood, and the medical support that accompanies it, is an important process. In this edition of Airing Pain we explore the challenges and successes that patients, parents and healthcare professionals encounter when entering this crucial period.

Pain management consultant Dr Mary Rose and nurse Mandy Sim of the Royal Hospital for Sick Children in Edinburgh speak to Paul Evans about the methods they use to make the transition into adulthood as supportive as possible, as well as the importance of educating patients, parents and schools on the biopsychosocial aspects of pain and its management.

Dr Alison Bliss, paediatric anaesthesia and chronic pain consultant at Leeds Children’s Hospital, emphasises the importance of finding a balance between cultivating independence in young-adults with pain and helping them find the support in their transitional period.

Paul also speaks to Dr. Line Caes, psychology lecturer at Stirling University, touches on the nuances in dealing with how young people see themselves in comparison to their peers and making the classroom a more accepting space.

Issues covered in this programme include: Alcohol, arthritis, children and young people, chronic pain as a condition in its own right, chronic primary pain, depression, drug abuse and misuse, family, mental health, pacing, peer support, relationships, self-harm and youth services.

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, and this edition has been funded by a grant from the Agnes Hunter Trust.

Dr Alison Bliss: Quite a lot of paediatric services are funded and set up, up to [a child’s] 16^th birthday. But then a lot of adult services don’t start until their 18 years. So if you’re a teenager with chronic pain, [in] that sort of 16 to 18 age gap, where do you get your help from?

Evans: Chronic pain affects eight per cent of young people within the 13 to 18 age range in the UK. And to put that into perspective, 15,000 of those live with arthritis, and that’s just one condition.

So in this edition of Airing Pain I want to focus on what happens to the care and support for those with chronic pain conditions when – according to classification – they are neither child nor adult. So when does childhood stop and adulthood start?

Dr Mary Rose is a consultant in the pain management clinic at Edinburgh’s Royal Hospital for Sick Children.

Dr Mary Rose: Well there are legal definitions, in that you stop becoming a child at the age of 16, although you’re able to give consent in Scotland from the age of 12 onwards. But practically when we’re managing children and young people, I think we recognise that there’s a distinct group, particularly the 16 to 23 or 25-year-old age group. These are what I would consider young adults rather than children, in that they have very distinct needs from children, yet there’s still a lot of psychosocial development going on between the ages of 16 and 23, so that doesn’t always fit very well with the model of care that we have.

Evans: Dr Mary Rose. And that model of care, to the outsider at least, seems rather baffling.

Dr Alison Bliss is a consultant in paediatric anaesthesia and chronic pain at Leeds Children’s Hospital.

Bliss: When our service was originally set up we were funded for 16 years, and quite quickly we realised that actually [for] quite a lot of teenagers that’s the time when they develop pain. They have nowhere to go, so we expanded our service up to 18 years. And for the vast majority of young people we hope that, while they spend their time with us, they learn the life skills and the self-efficacy that help to address their problems, so that pain doesn’t go on to be a problem into their adult life. But there will be some young people for whom pain is a problem, [and] we haven’t got on top of it yet; they’re going to need a bit of extra help. And it’s all about trying to make a joined up path, so they know where they are going to get their help from, they know where they are going to get their care from, who’s going to support them as they move out of the children’s services and into the adult services.

Evans: Now it’s interesting you use the word children’s, because the last thing a teenager would want to be called is a child. There’s enough going on in a teenagers mind, from memory.

Bliss: Absolutely. It’s the difference, isn’t it, between the absolute horror of being sat in a waiting room full of snotty nosed children, with bits of coloured plastic sitting around everywhere, or being sat in a waiting room full of old people looking at posters advertising walking aids and incontinence aids. You don’t really fit in to either of those worlds.

But also we know that teenagers who have chronic pain, because it’s coming at that crucial time when they’re trying to find their sense of self, they’re at a higher risk of doing risky things. Sometimes that can be from the self-harming aspect of things, if their moods are low, but also in terms of social things, for instance we know that they’re at higher risk of having unprotected sex, not thinking through their decisions, trying alcohol and drugs; this is the time of life when it happens. And so we’ve really got to engage with the young people, and make sure that we stay engaged and that I can hand over to somebody who is also going to be engaged, because if they feel like medicine is just dropping them, then they’re less likely to come to appointments, they’re less likely to follow advice, they’re more likely to go off and undertake these risky behaviours.

Evans: What’s going on that makes them do these risky things?

Bliss: I don’t think anybody knows exactly what’s driving that, but there are some themes that we think are becoming really apparent. So we know that if you’re in pain every day and there’s nothing to see for it, there’s that sense that you’re not being believed and that makes you feel very isolated and alone. And if you have a condition that means you can’t keep up with your friends, you can’t walk round town all day, you can’t get out and do these activities, then, again, it’s that sense of isolation. And sometimes it’s desperation: people don’t believe me, they don’t know what I’m going through, I’ve got no other way of letting out these emotions.

And so when I see young people in my clinic the first time I meet them, I meet them alongside my clinical psychologist, and a part of that consultation is about thinking about the impact of pain on mood, and how low that mood gets. And how they’re coping with that, and where they’re accessing any help and trying to pick out right from the start anyone who is at risk from those self-harm ideas and thoughts, and whether there’s anyone there to help support them through that.

Evans: One of the things about being a teenager is actually, you don’t want Mum sitting next to you when personal things are happening in your life, but you do need that support, but you’d like it to be invisible.

Bliss: Yes, one of the big things about being a teenager is [that] it’s that one time in your life when you’re struggling to find your own sense of self, and you desperately, desperately don’t want to stand out from anybody else. And for teenagers with chronic pain that’s really hard because you have something that makes you disengage to a certain extent, you can’t do the things that you’re friends do, but they can’t see a reason why. And then it’s hard to talk about it to your friends, hard to talk about it at school or college. And so quite a lot of our young people go through a lot of unnecessary suffering because they don’t know how to share that information with the people around them, to find the support they need, and the independence they need at the same time. It’s a mix of both things.

Evans: It’s hard for parents as well.

Bliss: It’s very hard for parents, particularly for parents who’ve now got teenagers that started out as a young child with a chronic condition, where for a long time they’ll have been working super hard being the advocate for their child, making sure their child gets all the help they need. And sometimes accessing chronic pain services for children is quite tricky because there aren’t so many of us around, so they may have had to battle for a long time. And for us to turn around and say, ‘and now it’s OK to let go’ – that’s a hard process, and it’s about making sure that if we start that from the paediatric side of things, we’ve got a counterpart waiting to pick up and carry on that process on the other side. So we’re becoming increasingly aware of it, but up until the last couple of years it’s really been patchy about what happens for these new adults.

Evans: But is it as simple as that then, you’ve finished one service, you’re 17 on the Monday, you just turn up and say where do we pick up from here?

Bliss: It’s very difficult. We recognise that actually for a lot of our young people it’s not based on chronological age. We see some 18-years-olds who are about to possibly go to university, but have been very much still in that shared responsibility of the family – they’re not used to making decisions by themselves, they’ve been in full time education, they’ve been experiencing life as an older child. And for them really to say, that’s it off you go into adult land, that’s quite hard. Whereas actually we’ve got some 16-year-olds that are already seeking independence, they’ve decided they’re moving out from school, they’re going to college, some of them are making plans to live independently. Which they’re allowed to do, that’s fine, and for them actually they are ready for adult services possibly that little bit earlier. It’s trying to find the right balance, and ultimately what you can access in your area to a certain extend depends on what you’re funded for, and that’s where we have problems.

Evans: That’s Dr Alison Bliss, consultant in paediatric anaesthesia and chronic pain at Leeds Children’s Hospital.

Dr Mary Rose again.

Rose: As well as having to deal with all the changes that everybody going through adolescence deals with, these young people are having to deal with the fact that they have a chronic disease that impacts on their ability to go to school and their ability to socialise with their peer group. Any young person, as they become an adolescent, they have an awful lot going on. All the changes with puberty, and the pushing the boundaries and risk taking – although I think there’s a tendency for patients who have a chronic condition, [who] sometimes may have been a bit held back, then they’ll be less independent, less likely to be showing some of the age appropriate behaviours. So there’s a degree of wanting to normalise that with patients that we see.

We do provide quite an ongoing service to them – they’re able to contact the pain management nurses, they can phone up when they need to – and I think just by the nature of the pressure on adult services, that kind of ongoing availability of support isn’t there. I think [with] the adult services, a patient will be seen in adult services and then generally advice [will be] given to their GP as to how they should be managed. So we’re very aware of that when we are seeing young people, and aware that they may transition on to adult services, [we’re] making them aware that the services will be different.

Evans: Adults faced with pain management issues, self-management issues, would think about things from an adult point of view – well, hopefully – a much more mature point of view. Getting over self-management messages [to young adults], pacing and things like that, it’s a bit more complex isn’t it?

Rose: It is, and I think it’s key to what we do in the clinic. I think one of the most important things that I do, rather than prescribing medicines, or referring to physiotherapists, is giving the formulation, and explaining the biosocial model for pain. And that’s how I draw in why self-management techniques work, I give quite detailed explanations about pain transmission and why techniques such as relaxation and distraction and psychological therapies do have a role.

Evans: Doctor Mary Rose.

Mandy Sim is a pain nurse specialist at Edinburgh’s Royal Hospital for Sick Children. So what are those self-management techniques and messages she reinforces to patients and parents?

Mandy Sim: Medication is not a long term answer. The use of relaxation techniques have to be practiced, it’s not something you become good at straight away. So I would always encourage them to maybe build it into their night time routine, so you’re practicing it, which might also have an impact on your sleep. But it also means that by practicing these techniques, when you’re having a bad day, you automatically go straight into these techniques and you’re not having to overthink about how to do [these techniques], because you’re obviously thinking about that, but your mind’s busy because you’re sore, so it becomes second nature to them. So these techniques have to be practiced, I think that’s the big message.

And this is not something that you’re going to get through to these young people on your very first appointment with them. But we know these children sometimes for a number of years. So you build up a relationship, you build up a rapport with them, and at that stage they’re more likely to listen.

Evans: So you’re growing the relationship with them – when they go to the secondary school, when they cease to become children and become young adults, you’re actually growing with them.

Sim: Yeah, absolutely. And it’s not [that they] come to clinic and then we don’t have any contact with them again till the next clinic. We pick up the phone, [and say] ‘we saw you six weeks ago at [the] clinic, how’s the treatment that we introduced that time?’ There is a rapport building up, the families feel that you’re interested in them because you’re picking up the phone to find out how you’re getting on. With the young people, ideally I try to speak to them directly, rather than just going through the parents, so again you’ve got that rapport, and that relationship building with them.

Rose: I suppose the other key important message is that you use self-management strategies and exercise, regardless of whether the pain is there or not; you don’t wait for the pain to go away and then start doing this.

Sim: These strategies also, they’re lifelong and they support the young person, not just with their pain, but any stressful experiences in their lives, so sitting exams, sitting their driving test, moving away from home. So these strategies they’re learning, they’re not just relevant for pain, they’re relevant for so many things in their life.

Evans: That was Mandy Sim.

Now with the biosocial model for chronic pain, the two social environments a child spends most time in are home and school. Doctor Line Caes is a psychology lecturer at the University of Stirling’s school of natural science. Her research interests are in the psychosocial aspects of children’s pain.

Dr Line Caes: Children don’t live with their pain on their own, they share it with their parents, [and] parents respond to their child’s pain. But also children actually spend quite a lot of time in school, even when they’re in pain, so we’re looking at how teachers are dealing with that, and how teachers can be supportive of a child who has chronic pain.

Evans: So that’s very interesting, because most chronic pain conditions are invisible.

Caes: And for these kids that is a bit of a mixed bag, because they do want to be like every other child, they don’t want to be treated special. So the fact that pain is invisible is important in that sense; but on the other hand, because it is invisible, when they really need help it’s also difficult sometimes to get help, and to get heard because somebody is saying, ‘but you were dancing yesterday, and this morning you can’t be in school and write your essay, so what’s going on there?’ So because it’s invisible it’s difficult to get heard and to get help when they need help.

Children can live as normal a life as possible even if they have chronic pain, and it’s actually important that they learn to be normal children, and we call it learning to be resilient. And you can laugh if you have chronic pain, you can have joy, you can have pleasure, you can go out with your friends. I think the most important thing for these kids with chronic pain, is that we realise that they have to pace themselves more. So yes they can go out at night, they can play with their friends, but probably the next day they’ll have to rest and do more relaxing. And that’s what we call pacing: they can’t [exert themselves] every single day, they’re not having an extended amount of energy, they need to rest and compensate for [it] if they went out with friends, for example.

Evans: That’s good advice I’m sure for the person with pain, for the child or adolescent with pain. But of course it’s two way travel: the teacher, what should they know?

Caes: We interviewed eight teachers, across seven different schools, to see what they want to know. They had experience of having a child in their classroom with chronic pain for at least one year, and we asked them, ‘what would you want to know, what were you missing, to help that child in an effective way?’ And they do say training – ‘we need to know practical tips on how to handle the chronic pain in the classroom’ – because the main thing that teachers now do is they pick up the phone and they call the parent and say, ‘your child is really not feeling well and you need to come and pick her up and take her home.’ But they realise that that’s actually detrimental, that’s negatively affecting their academic performance, their ability to engage with their peers and have social interactions, and learn from those social interactions.

So they really want to be trained on helping those children with chronic pain. And I think one thing is to learn that it’s invisible and you can’t always immediately see what’s going on, so you really need to check in with the child every now and then, [ask them] ‘how are you doing?’ And that pacing, it isn’t because yesterday that child was looking well and was taking part in the class, that [therefore] the next day it will be the same; [the] next day can be entirely the opposite. So I think learning that it can switch in a second, and switch quite quickly for a child with chronic pain, is one of the important things to learn.

Evans: As you said, a child, or a teenager, an adolescent wants to appear normal, but there’s always the danger that having coached the teacher, if you like, how to deal with this, he or she is pulling that child out of the normal group and setting them elsewhere.

Caes: That is a tricky balance to find. One example was, for instance, a child that we spoke to who had juvenile idiopathic arthritis, and have difficulties walking up the stairs, so the school allowed her to use the elevator – but she’d rather crawl up the stairs that use the elevator, because she was the only child in her class allowed to use the elevator and she didn’t want to stand out.

So it’s finding that tricky balance, and I think from the interviews we did with the teachers, they had actually quite nice suggestions I hadn’t thought of. The teachers have a curriculum they have to teach, they have a whole lot of biology they have to address, [of] geography [and] history, and they were like, ‘why don’t we have a curriculum about pain, a whole set of materials that we can put in the curriculum and teach the whole class about pain, and about what chronic pain is, that children can also get chronic pain, and children can also get juvenile idiopathic arthritis and it’s not just a disease for old people.’ Then they were like, ‘you can pay attention to the child, you don’t have to point the child out, but you [can] address chronic pain with the entire class as part of the curriculum, and everybody is learning about chronic pain and how to deal with chronic pain.’ And I think all children can benefit from it. And so you’re addressing the needs of the child with chronic pain without pointing the child out and having it stand out in the class. And when we were talking with the teachers [I thought] that’s brilliant, I hadn’t thought of that?

Evans: Well it is a fantastic idea, but I think many teachers would say yes it’s a fantastic idea, but this is just another burden on the overcrowded curriculum?

Caes: But in the one sense it’s already a very busy curriculum, but now they have to address a child with chronic pain, they have to address the needs of the child with chronic pain, in addition to that overcrowded curriculum. So they were saying probably something has to make space for adding that to the curriculum – fair enough, everything is important. So there is always making that balance, but now it’s coming into addition there anyway, and the teachers realise that there’s more and more kids with pain, or with disabilities in the classroom, and there’s more and more prevalence and it will become probably more and more prevalent in the future. So that is one thing that they feel is possible to address, becomes now it comes in addition to that busy curriculum.

Evans: Doctor Line Caes of Stirling University in Scotland. That particular study of hers was done with primary school teachers, but the results do concur with other studies involving secondary schools.

Now, pain education in schools is not as fanciful as you might think. Mandy Sim, a pain nurse specialist at Edinburgh’s Royal Hospital for Sick Children, is at the front line – or the coal face if you like – of support for the Pain Management Clinic. And the front line does indeed reach into her patient’s classrooms.

Sim: It is giving them support to cope with changes that they’re going through. Supporting them with being able to engage with their peer group, with education; supporting the schools to understand what the physical condition is, what the needs of the young person are, and being able to put things into place to support that child to get into school, to get their education, to get their peer group, and get them socialised so they can become the young adult that they’re going to become.

Evans: So you’re talking to the world around the young adult?

Sim: Yeah, absolutely – so involving parents, involving the school, are there are community services available. And sometimes even the peer group. So I have been known to go into the class and speak to the class about chronic pain, how it affects young people, how they behave when they’ve got pain and some of the treatments that we use to help them manage their chronic pain.

Evans: So what would you tell them?

Sim: I speak to the young person who is concerned, and say, ‘do you want your peer group to know that I know you, or am I just coming out as this is my role?’ So I will explain what my role is, talk about chronic pain, try to engage the class to get them to say what sort of things might cause pain, how might I know has somebody got pain. It’s a very two-way session that I do. And then [we] look at things that we would do to provide some pain relief for the young person, to get them into school, and hopefully to get their peer group to understand that you don’t have to have a plaster on your arm, you don’t have to have a scar, to have pain. It might be something that’s actually quite invisible, but actually you could have pain that’s there every single day.

Evans: I remember talking to a friend who was a wheelchair user and her showing me round her old school. Things that I thought were absolutely fine, simple things like timetabling, you can be [in] room one for something, then your next lesson [is] in room ten. And nobody’s taken into account the one stair that you have to get through. So the whole aspect of dealing with people with physical disabilities has to be rethought.

SIm: Well we look at things like getting out of class early, so they’re missing the hustle and bustle of the corridor, potentially having a buddy that can support them through the corridors, maybe having two sets of books, so they’ve got a set of books that’s at home and a set of books that’s in class so they’re not having to carry books back and forth. So there can be lots of what we’d perceive as quite simple fixes, but it makes a huge difference to the young person.

Evans: It’s a lot of thought isn’t it, and yet again, not a lot of thought, to sort these things out.

Sim: And it’s that face-to-face, or that telephone communication with the teacher, and that [communication] – [whether] I’m phoning from the pain clinic, I’m phoning from the hospital – that opening line of the communication makes such a difference to the young person, [knowing] that they’ve got that level of support.

Rose: I think a really important message that you get across is that these young people are going to have good days and bad days as well, which we sometimes find the schools struggle to understand: why a young person one day can do lots of things, but then for the next few days they can’t.

Evans: It seems to me that young people might get better treatment in that respect, from the biopsychosocial [aspect], from the social aspect; young people may get better treatment than adults.

Sim: Yeah, I think from the social, and the engaging with the peer group and education. I don’t know what goes on in adult services, but I would possibly agree.

Evans: Well for somebody with chronic pain – I have chronic pain – the thought of somebody coming in and explaining to my friends and colleagues, and my bosses what is going on, would have been very helpful.

Sim: And the feedback that we get from both schools, from the young person concerned and from the parents, [shows] they very much appreciate that on the coal face front, coming out and speaking to people and being visible, they find that very helpful.

Evans: That was Mandy Sim.

Here’s Doctor Alison Bliss, consultant in paediatric anaesthesia and chronic pain at Leeds Children’s Hospital again.

Bliss: Adolescents, they’re a group in their own right, and we need to up our game really.

Evans: How do you do that?

Bliss: It’s about trying to make it a process, so we’re now starting to change the environment that we see these young people in: giving them information right from the start, to say, ‘it’s OK if you spend a bit of time with us, without mum and dad there – we can split our consultation so that you can come and talk to me by yourself, or talk to our nurse by yourself, and then we’ll join mum and dad in and help manage things on.’ Because when you go out into adult land, you’ll be asked to go in by yourself, and the amount of support you get from your parents is going to lessen.

Evans: That’s Doctor Alison Bliss in Leeds Children’s Hospital.

What about Edinburgh? Doctor Mary Rose.

Rose: We would definitely continue to see them once they remain in full time school education, so we’re happy to see them up to 18. If we get a new referral for a patient aged 17 or so, we say, ‘if we see them they’re not going to stay in our service very long.’ So we may prefer them to start their journey in adult services, which I realise is quite tough for these young people. So when we do transition we always make contact with the adult chronic pain services first of all. And they are – certainly within Edinburgh – there’s one of the consultants [who] has an interest in young people in this age group, and also one of the psychologists does as well, so we’ll be in touch with them before, and we’ll do a joint appointment as the first appointment as well. So that we can be clear about the purposes of the transition, what we’re expecting from transition, so that the young person and their family feels supported when they do start attending adult services.

Evans: Having, as you’ve said, grown with these young adults from possibly a very early age, they might feel cocooned and loved, and [then] that carpet is taken away from them, that loving feeling.

Sim: Yeah, and it’s something that we’ve been very aware of. We’ve kind of grown with them over the years, and as we’re getting closer to that transition, there are maybe slightly fewer phone calls; we’re just trying to promote a bit more self-management so they’re not going from phone calls from the pain team every six weeks to ‘off you go into adult services.’ So it’s like letting your child go: you’re just giving them a little bit more independence, yeah, managing their own symptoms a little bit more. We’re there in the background, you can contact us if there’s any problems, but [still] just giving [them] that bit more independence as we’re coming up to transition.

Evans: That’s Mandy Sim, pain nurse specialist at the Royal Hospital for Sick Children in Edinburgh.

Now as always I have to read you the 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 wellbeing. He or she is the only person who knows you and your circumstances, and therefore the appropriate action to take on your behalf.

Don’t forget that you can download all editions of Airing Pain – this is number 99 – from Pain Concern’s website, which is painconcern.org.uk. And there you’ll also find Pain Concern’s extensive resources and support, information leaflets, self-management videos, our forum and much, much more. Once again, it’s painconcern.org.uk. And do follow up on Twitter, Facebook and other social media platforms for the latest news and information.

Now, I just want to end this edition of Airing Pain with advice for parents whose children – or are they adults? – anyway, young adults, as they leave paediatric services. Doctors Alison Bliss and Mary Rose.

Bliss: There are some things that you need to support them and let them do these things for themselves, and give them that little bit of independence as they’re going along, and that’s hard. It’s hard when you’ve had a child with a chronic condition, a teenager with chronic pain, [who] are often a lot more dependent on their parents that the typical teenager. And it’s being able to find that right balance to support the young person as they gain increasing independence and to support the parents, to say at times it’s OK to let go.

Rose: It’s hard being a parent anyway, [even] if your child doesn’t have a chronic condition, so I recognise it must be even harder for parents of children and young people with chronic conditions to let them go and to encourage them to become more independent, but it’s the right thing for them to achieve their full potential.

Contributors:

Dr Mary Rose, consultant at the pain management clinic at Edinburgh’s Sick Children’s Hospital
Mandy Sim, pain nurse specialist at Edinburgh’s Sick Children’s Hospital pain management clinic
Dr Alison Bliss, consultant in paediatric anaesthesia and chronic pain at Leeds Children’s Hospital
Dr Line Caes, psychology lecturer at University of Stirling’s School of Natural Science, researcher in paediatric psychology and psychological aspects of children’s pain.

More information:

Exploring the challenges and successes that patients, parents and healthcare professionals encounter when pain in adolescents

This edition was funded by a grant by the Agnes Hunter Trust.

Paul also speaks to Dr Line Caes, psychology lecturer at Stirling University, touches on the nuances in dealing with how young people see themselves in comparison to their peers and making the classroom a more accepting space.

Contributors:

Dr Mary Rose, Consultant at the pain management clinic at Edinburgh’s Sick Children’s Hospital
Mandy Sim, Pain Nurse Sspecialist at Edinburgh’s Sick Children’s Hospital pain management clinic
Dr Alison Bliss, Consultant in Paediatric Anaesthesia and Chronic Pain at Leeds Children’s Hospital
Dr Line Caes, Psychology Lecturer at University of Stirling’s School of Natural Science, researcher in paediatric psychology and psychological aspects of children’s pain.

More information:

What is the IASP Global Year of Excellence in Pain Education, and how does pain management research benefit the patient?

This edition is funded by Pain Concern’s donors and friends, assisted by an educational grant from Grünenthal.

The International Association for the Study of Pain (IASP), formed in 1973, is the leading forum of scientists, clinicians, healthcare providers and policy makers supporting and promoting the study of pain and using that knowledge to improve pain relief worldwide.

Each year IASP focuses on a different aspect of pain that has global relevance. In 2017, IASP focused on pain after surgery, and joint pain was the focus of 2016. In this programme, Paul Evans speaks to Dr Paul Wilkinson, lead of the IASP force of the 2018 Global Year of Excellence in Pain Education.

IASP hopes to advance the understanding of pain in the areas of government, professional and research education and ultimately create strategy to communicate the gaps in pain education globally.

Paul also speaks to clinical psychologist Dr Nicholas Ambler, patient trainer Lisa Parry and assistant psychologist Sareeta Vyas at the Bristol Pain Management Programme to find out if there is a correlation between investment in pain management research and development and patient benefit.

Issues covered in this programme include: Availability of pain services, CBT: cognitive behavioural therapy, chronic primary pain, educating healthcare professionals, funding of pain services, GP, insomnia, policy, online resources, sleep compression and volunteering.

Contributors:

Dr Paul Wilkinson, Director of pain management services in Newcastle and lead of IASP 2018 international task force
Dr Nicholas Ambler, Clinical Psychologist and lead of NHS North Bristol Pain Management Programme
Lisa Parry, patient and patient trainer at NHS North Bristol PMP
Sareeta Vyas, Assistant Psychologist and leader of sleep management programme at NHS North Bristol PMP.

More information:

International Association for the Study of Pain website iasp-pain.org
IASP’s 2018 Global Year of Excellence in Pain Education iasp-pain.org/Membership/SIGDetail.aspx?ItemNumber=742
NHS North Bristol Pain Management Programme: nbt.nhs.uk/clinicians/services-referral/pain-clinic-services-clinicians/pain-management-programmes-pmp.

What is the IASP Global Year of Excellence in Pain Education, and how does pain management research benefit the patient?

To listen to this programme, please click here.

Prefer a PDF?Download

This edition is funded by Pain Concern’s donors and friends, assisted by an educational grant from Grünenthal.

Each year IASP focuses on a different aspect of pain that has global relevance. In 2017, IASP focused on pain after surgery, and joint pain was the focus of 2016. In this programme, Paul Evans speaks to Dr Paul Wilkinson, task force lead for the 2018 Global Year for Excellence in Pain Education.

IASP hopes to advance the understanding of pain in the areas of government, professional and research education and ultimately create strategy to communicate the gaps in pain education globally.

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 health care professionals. I’m Paul Evans, and this edition is funded by Pain Concern’s donors and friends, assisted with an educational grant from Grünenthal.

Dr Paul Wilkinson: If all health care professionals in the field of pain did one hour of education for one day in just one year, in terms of the number of people that would be reached, it would make a very significant difference.

Evans: The International Association for the Study of Pain, or IASP as it’s known, brings together scientists, clinicians, health-care providers, and policymakers to stimulate and support the study of pain and translate that knowledge into improved pain relief worldwide. They have nominated 2018 as the Global Year of Excellence in Pain Education.

Dr Paul Wilkinson, who is Director of the Pain Management Service in Newcastle in the UK, is lead for the international task force for the project.

Wilkinson: The Global Year for Excellence in Pain Education is divided into four main areas:

Patient education
Professional education
Public and government education
Pain education research

The cornerstone of the Global Year for Excellence in Pain Education will be a web-based resource which will have educational resources for professionals, for patients, for public and government and to facilitate education research. But resources are not much good on a website; we have to lift them off the website and there will be strategies to try to communicate the needs, the gap in pain education through the world.

One key example would be that there is an absence of minimal essential training for healthcare professionals in pain management in hospitals and healthcare institutions.

There was an important publication in Canada and [it] was being replicated in other countries that showed that the educational provision to healthcare professionals was less than [to] vets. Obviously, the inference there was that maybe animals were getting the better deal than humans. So that was a strong statement for what needed to be done in in pain education.

Evans: So how will the Global Year address that?

Wilkinson: It’s got a multi-prong specialty covering the different areas of education.

With patient education, we are providing a series of resources that will improve patient education, using the most up-to-date research.

For professionals, there is a launch of a number of curricula and resources to try and help professional development. In addition, we want minimum essential training for all health care professionals.

Related to public and government education, we want to carry the messages to government and make public aware of the problems that the patients suffer with and the lack of resources through the world.

Finally, as well as trying to bridge the gap between what we now know and what we do, we would actually like to know more, so pain education research is an important part of the Global Year.

Evans: Now you’re based in the UK, you work in Newcastle with the NHS. Is there something you can learn from other countries, sharing of information, if you like, and other countries can learn from you?

Wilkinson: Absolutely. The dissemination of different experiences is an important part of the Global Year for Excellence in Pain Education. The International Association for the Study of Pain values this in part of its work. There are positive experiences of treating different conditions in different parts of the world. It’s really important that new developments are shared across countries and between countries.

Evans: When we speak again in a year’s time, what do you hope will have happened?

Wilkinson: I hope that every person with pain in the world would know the kind of resources that are available to help them. We want governments through the world to recognize pain as a disease and to provide the resource to ensure the well-being of their population.

Evans: You brought up an interesting point of governments recognising pain. Well, is chronic pain a condition, or was it just a result of some other condition?

Wilkinson: Well, there are two types of pain, broadly speaking, acute pain and chronic pain. These may not be the best terms, but that’s what we use medically. Acute pain is pain that follows injury. It’s closely related to injury, it’s proportionate to level of injury – as the injury heals, the pain resolves.

What I think people don’t know, is that where pain persists, yes it may be due to a problem, it may be due to a rheumatological condition (rheumatoid arthritis) that’s not resolved, but most commonly, it occurs in its own right. It’s a disease in its own right, there are changes that occur in pain parts of the nervous system, which mean that when injuries heal, instead of the pain going as injury gets better, the pain unfortunately stays.

Sometimes we recognize these injuries because we know the accident occurred. But sometimes these injuries are small, they occur through our lifetime and lead to persistent back pain or persistent neck pain, taking away the life that we’d had previously.

In fact, one of the starting points of the Global Year is to try to improve our understanding of pain better through patient stories. So the Global Year of Excellence in Pain Education is starting with patients, putting patients in the middle.

Evans: That education side from the patient’s point of view, explaining what pain is and what’s available there, that’s something that I hope we in Pain Concern can contribute to this Global Year of Excellence in Pain Education.

Wilkinson: Absolutely. And I hope that this will contribute significantly to education in promoting the Global Year.

Evans: That’s Dr Paul Wilkinson, lead of the International Association for the Study of Pain’s task force of their Global Year of Excellence in Pain Education. You can keep up to date with all that’s happening throughout the year at IASP’s website which is https://www.iasp-pain.org

And don’t forget that Pain Concern contributes substantially to patient and healthcare education through its information leaflets, helpline, magazine, campaigns and of course these Airing Pain podcasts. This is 98 by the way – that’s nearly fifty hours of information about living with and managing chronic pain, from leading authorities in their field – be they healthcare professionals and researchers or expert patients. You can download all editions from Pain Concern’s website which is www.painconcern.org.uk

It’s probably best not to listen to all 50 hours’ worth in one go, which brings me to the 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 wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf.

Now, advances in pain medicine and pain management can cost an awful lot of money in terms of research and development and they can take years to roll out. But is there a correlation between investment and patient benefit? Pounds per points on the pain score if you like?

Dr.Nick Ambler: There’s a goldmine here. It really is something that could make a massive difference to the way in which people sustain the gains, sustain the momentum of a pain management programme. That’s our feeling, there really is something to mine into here.

Evans: That’s Dr Nick Ambler. He’s a Clinical Psychologist and a lead of the North Bristol Pain Management and Self-Management Programmes at Southmead Hospital in Bristol in the UK. And this is Lisa Parry.

Lisa Parry: I’m a patient that’s been through a self-management programme within the hospital here and at the end of that, we were asked if any of us were interested in volunteering to help present the programme. I had found it so beneficial for myself, that I thought it would be maybe a good thing for me to do.

Evans: Nick, you’re one of the leads on the pain management programme, I’m not sure I’ve come across patients being actively involved as teachers.

Ambler: It’s something we started around 2008/2009, as part of a multi-centre project across the country regarding long term conditions. [The project] involved not just involvement of a patient tutor in providing information and personal experience, but the sharing of the delivery of the whole course, which was a big leap for us then. Quite a few of us were concerned about how well that would work out, but we quickly found that it works spectacularly well within the context of reorganizing our service to have a middle tier.

I think most people have a grasp of what a pain management programme is nowadays, which from our point of view is quite an intensive form of support for people to learn self-management strategies with chronic pain. We created a middle tier for people that are really just ready to have a go at it. They already understand the basics of it, they’re not ambivalent about wanting to try that stuff out. We designed a shorter course, where you basically hit the ground running with that.

Evans: Now, I guess that it’s not unusual to have a so called “Expert Patient” in just to talk to people, but actually to teach them… what are the issues there?

Ambler: I think the concerns everybody had really from people volunteering to come forward were “What do you want me to do, is it right that I should be doing this? I need to know what’s going to happen, I need to know precisely what I need to say”.

From the health professionals’ perspective, concern at having gathered a hell of a lot of experience before, you’re in a position where you can deliver pain management program, [but] it kind of felt as if that experience was being not being acknowledged. You do need that as a health professional, but what they lack is a day-to-day understanding of what it’s like living with pain, they don’t have personal reference points.

With every element of course delivery, there’s the stuff that will resonate for Lisa because she’s had to face those challenges in ways that I haven’t, so I can’t constantly refer back to that. They’re not a model of how well somebody can adapt themselves despite having pain every day. Lisa brings all of that stuff into a course in a way that I can’t.

So the thing that we needed to tackle fairly early on, was setting up a training course which provided the basic rudiments and also to define the role, because there are clear distinctions in the way in which the patient tutors operate within their share of the course and the way in which the health professionals operate.

Basics that we all observe though, is when you’re doing one of these courses, we have an understanding which is our own, that we try not to dictate. So we’ve had this mantra of “Ask Don’t Tell” which is basically – explore issues with people, but don’t try and tell them how to live their lives. The learning experience of taking part in one of these courses means rubbing shoulders with others in the same situation, learning as much off them and learning by trial and error, prioritizing what you want to change. All those things are going to be a unique thing for each individual taking part.

Evans: Lisa, tell me about your pain journey.

Parry: Basically, I was fit and active, working for Bristol University at their Veterinary School, a very physically demanding job and one day I bent over at work and I then couldn’t walk. At the time I was just bent over in pain, I’d had what I think they used to call a slipped disc, a bulging disc and was expecting a fairly quick recovery from that which didn’t actually happen and I just could not do the job I was employed to do basically. I had to give up working then and it’s been kind of finding my way back from a bit of a dark place, from that point onwards, living with pain. It’s pretty constant, but now having done the self-management program, I’m able to manage that to a level where I can continue to do the things that I want to do now.

Ambler: I think anybody living with the situation that Lisa’s just described, faces lots of choices. They may not recognize those choices straight away.

For example, what do you prioritize if you only have so much energy and focus left to you in a day because you’ve had a terrible night’s sleep and you can’t move around very well. You could be thinking about managing a bit of the housework perhaps, or go to see someone or reading or something like that. What are you going to do? And what are you doing, for example, to maintain your fitness, against the fact that the pain that’s going on is probably complicating things with muscle tension, so if you’re inactive, it’s harder to get to sleep. So, when you make that choice, it will have consequences.

If you do some more housework, it’s going to have a beneficial effect in one area, but not in another. If you decide to, say, call a friend or go see someone, likewise.

Evans: In some ways, it is a little bit of self-control as well, because if I’m feeling well today, or if Lisa’s feeling well today, she could go out and run a marathon. It might not be the correct thing to do, so you have to control your thoughts and actions.

Ambler: Yes, the topic of pacing is one of the things that people reflect back on at the end of course saying “I really needed to do something about that…” which is odd, because at the beginning of the course we generally ask people “who understands the importance of pacing?” and everybody says they do.

They all say “Yes, it’s really important” and so the next question that follows from that is “who is pretty good about applying it?

Evans: Lisa, how easy is pacing?

Parry: Really, really difficult [laughs]. Not for me now, now I’ve kind of got the hang of it. But at the beginning, really difficult to think “I’m going to do a minimum amount of something” to enable me to then get through the rest of the day. So I’ll do a minimum amount and then I’ll put a rest break in, or I’ll take a short walk, or I’ll do something else and I’ll go back and do another small portion a bit later on.

You’re fighting that instinct to get the job done, which is how I was brought up – if you start a job you should finish it. I think that’s perhaps how a lot of people are, you want to get things done. To break that cycle is really quite difficult at the beginning, but once you do, it’s fantastic and it has actually enabled me to do far more, long-term than if I had tried to keep going on this cycle of “do it all” and then be off my feet for four days.

Evans: Nick, I suppose you have to keep (for want of a better term) patient trainers on message, it has to be within your curriculum?

Ambler: Yes, and there is always a sense with these courses that we don’t have enough time to get through all that we want to get through. There’s a degree to which one adapts each course, according to what crops up for that group of people. Some have bigger priorities, for example, around the way in which frustration and anger can come out in everyday life in relationships. That wouldn’t normally be part of our curriculum for the course, but sometimes we bring stuff in about that and run a session on that.

Lots of groups have real issues with sleep, it’s something my colleague, Sareeta, knows a lot about. There’s other groups [where] that’s less the case and so we might magnify or play that down. But we do have core set of things that we need to get through.

I think as well, one of the disciplines for health professionals that we have to do, is for us not to be telling long, elaborate, metaphorical stories about why a point is important, when you have somebody sitting next to you who can talk from the heart about what they did in a much more succinct way. So, to an extent, the health professionals need to rein it in, not just the patient tutors!

Evans: Sareeta, Nick has just dropped you in it by talking about the sleep course. The Sleep Management Programme, that’s not the same as the Pain Management Programme?

Sareeta Vyas: No, it’s a separate course that we run so people could come along to improve their sleep either before they attend a pain management programme or a self-management programme or after. It’s really a time just to focus purely on improving someone’s sleep. We’ve adapted the cognitive behavioural therapy approach for insomnia to cater for people in chronic pain.

So making their area for sleep as comfortable as possible, maybe putting in some routines of winding down before they go to sleep, putting in some consistent bedtimes and wake up times. We also look at thoughts that might be happening at night, because we know that a lot of people do their thinking at night and that can be quite distressing if their thoughts go to things that keep them awake.

But the most powerful part of the course is what we call sleep compression or sleep restriction. The idea of sleep compression or sleep restriction is actually reducing the amount of time that you are in bed so that the sleep pressure builds up throughout the day, so that once you do get into bed, you get off quicker. You may still wake up throughout the night, but the times that you are awake for are reduced and people report feeling their quality of sleep has improved as well.

It all sounds quite difficult because a lot of people really struggle with that. Initially you’re actually reducing the time that you’re spending in bed by a quite significant amount, so that can be really, really challenging to stay awake longer in the evenings and when every part of you wants to get into bed.

It’s a really difficult kind of intervention to go through and that’s where the group comes together really well. There might be several people in the group that are doing that together and so when they come back to report on how the week’s been, it’s something that can they can think about together and think of ways of how they can keep going with it.

Evans: At what stage do people come on the pain management course Nick?

Ambler: I would like to think people come when they feel that this is the right thing for them. So you meet people fairly early on after an injury, similar to the way that Lisa described. They could be expecting, reasonably, that they might recover [e.g.] I don’t need to be doing something like this, because I’m going to be better by this time next year.

Parry: My attitude going into doing my course was, even if I just learned one new thing that will help me to make an improvement; that would be enough. Obviously, I picked up lots more than that.

Evans: So you went from patient to patient tutor…how did that happen? How did you make that transition?

Parry: At the end of the course, we were asked as a group, if anyone would be interested in doing it. I actually had a Patient Tutor on my course, who I felt just made everything valid. It was real, it she’d had personal experience; she understood what we were saying. That was really important to me to have her, there so I just felt “Oh I’ll give it a go. I might not be able to do it, I may not even get as far as the meeting about it”. But I did and I did the training course, I then actually went and sat in on a course. I didn’t actually present or give any sort of teaching as such, but I was observing and watching what they were doing and then after that I did my first course.

Evans: What was that like?

Parry: Scary as can be [laughs]. Really scared, quite nervous, just with a group of people coming in that obviously you’ve never met before. Explaining to them that it was my first time and be nice to me, basically! But yeah, it was absolutely fine.

Evans: So did you feel the love, the empathy coming back at you?

Parry: Yeah, oh absolutely, they were really fantastic. Because I’d said “This is the first time I’ve done this”. They were just like “It’s really good, you’re doing fine” and that gave me a massive amount of confidence to keep going and to enjoy what I was doing.

Evans: So we’ve heard all about this empathy, this love – it’s a two-way thing for the patient tutor and the patient. What happens when they part company and the pain management programme is over?

Ambler: I think usually there’s a hope on the part of the health professionals, that this is the beginning, the platform after which people will power on. They have a grasp of what’s involved, but they haven’t resolved everything, they haven’t got to the perfect place for coping yet and that they will use what they’ve learned off each other in this part of the programme to take things forward.

But sadly, when you meet people later on, that often turns out not to be the case and one of the things that we’ve been trying to do differently in the last five years has been to change the way courses end. This all came from an incident that happened in that first group that Lisa was describing and it was when we met for a follow-up meeting three months after that course had finished. Do you remember what happened Lisa?

Parry: Yeah, one of the girls in the in the group basically took Nick to one side and said “Oh what do we do now, you can’t just leave us, we’re feeling like you’ve abandoned us” kind of that scenario and was sort of demanding “What do we do, what are we going to do?”.

Ambler: At this point, it’s not just me, health professionals who run courses tend to squirm. They have, in a sense, got to close this off now. That’s part of our process, because we need to be moving on, we’ve already prepared the next course and we can’t be doing with bids for keeping the whole thing going.

But in that situation, my squirming and wriggling led to me pushing it back to that group of people to figure out what they were going to do to keep it going. But the thing that was different, was the question was about them collectively rather than individually and that group of people decided they will carry on meeting without me, but they invited Lisa to carry on with them, as someone who knew and that’s pretty much what happened isn’t it?

Parry: Yeah and we still meet now. That was about six years ago from that first course. They decided they were going to get together every two weeks to meet up for a couple of hours, just to see how everyone was doing, to make sure people were still managing and they weren’t struggling with anything, they asked me to go along.

We had our Christmas party last Friday for a couple of hours and yes, we’ve continued to meet.

Ambler: [It’s] more than just the social contact though, they kept going with the business side…

Parry: Oh yeah, we still goal set. We took goal setting as our main focus because we’re constantly trying to move forwards. There are things we need to do and there are things we want to do. I think we all felt, through that first course, that that was a really beneficial thing for us so we carried on doing it.

Ambler: This became something that we learned from, because we figured out that this group of people were doing something that seemed clearly to be of great value to them. When I had reason to meet with them sometime after this, they’d resolved a whole load of problems which I would have expected to come back either into a General Practitioner’s clinic or into the pain clinic.

But they’d sorted that those problems out amongst themselves, crises really. So what we learned was to try and change the way we ended courses. Rather than think of the whole process as packing up the tents, the circus is leaving town, which is really what’s going on in the health professional’s head, to see it instead as the health professionals leaving the party, but we’re going to keep it going, we’re not finished yet.

So, we changed the way in which we close off the course. We don’t think about the concept of closure in the same way as would normally happen in a group programme. Whilst the course is underway, we spend a bit more time really building an idea that they can act as therapists for each other, within the course. [It’s] kind of co-counselling, which is the way we’ve worked out goal-setting, how to run goal-setting.

Rather than the health professional being in command of the whole process, what we do at the start of the course is try and get across the process by which you can be a counsellor to the person sitting next to you, to be a co-therapist and how you can look after each other. Also to really underline the importance of social contact as being one of the best protectors against relapse with chronic pain. Which is part of why that particular group were looking after each other so well, supporting each other when one of them was having a difficult spell

The kind of dialogues we have towards the end, we start to plant the idea, just past the halfway point, that they can carry on without us and then build towards an endpoint where a decision should have been reached by those in the room about whether or not they want to, and how they’re going to keep going in the absence of the health professional.

Evans: You’re fairly unique in what you’re doing here, with patient tutors. How do your colleagues, the rest of the world if you like, take that on-board?

Ambler: I think they’re intellectually interested and we’ve been able to present the findings that we’ve had. Considering that usually, you get less than 50% of people coming back for a routine follow-up at the end of a course (that’s not just something locally, you find that around the country); we got 70% of people involved in this networking between each other, willingly engaging with that process, which I still scratch my head in amazement about.

So there’s plenty pointing to this being quite a phenomenon that should really be taking off, but I think when you’re under pressure of service delivery, getting through the numbers, you stick to what you know. It’s difficult to take risks and perhaps that’s contributing to the kind of sense of a slow burn with this.

There are plenty of people that want to talk and are interested in it, but there hasn’t been the sense of, “there’s a gold mine here”. It really is something that could make a massive difference to the way in which people sustain the gains, sustain the momentum of a pain management programme, that’s our feeling. There really is something to mine into here.

Evans: That’s Dr Nick Ambler, Clinical Psychologist and a lead of the North Bristol Pain Management and Self-Management Programmes in the UK and also Assistant Psychologist Sareeta Vyas, who runs the Sleep Management Programme there.

So, casting our minds back to the International Association of the Study of Pain’s 2018 Global Year for Excellence in Pain Education, here’s something for healthcare professionals and policy makers to think about. The person with pain is not just a patient, but potentially is a valuable resource to help others. In the words of our patient trainer, Lisa Parry.

Parry: It has absolutely changed the way I approach things. I’ve got so much more confidence in myself, in the abilities that I have. It’s still a learning process for me, I find every course that I do, somebody will come in with something new and I’ll learn from them. It just constantly helps me reaffirm my own self-management and just giving me the confidence to try new things and make the move forward in life that I really want.

Contributors:

Dr Paul Wilkinson, Director of pain management services in Newcastle and lead of IASP 2018 international task force
Dr Nicholas Ambler, Clinical Psychologist and lead of NHS North Bristol Pain Management Programme
Lisa Parry, patient and patient trainer at NHS North Bristol PMP
Sareeta Vyas, Assistant Psychologist and leader of sleep management programme at NHS North Bristol PMP.

More information:

International Association for the Study of Pain website iasp-pain.org
IASP’s 2018 Global Year of Excellence in Pain Education iasp-pain.org/Membership/SIGDetail.aspx?ItemNumber=742
NHS North Bristol Pain Management Programme: nbt.nhs.uk/clinicians/services-referral/pain-clinic-services-clinicians/pain-management-programmes-pmp.

In the days leading up to Christmas, HealthUnlocked is hosting an advent calendar featuring a different health condition and its associated online community.

Each post will feature facts, symptoms, management techniques and much more; from common to rare health conditions.

Pain Concern has the privilege to be featured on Wednesday the 20th! The post will be informative, eye opening blog on chronic pain and CRPS, including videos and podcasts. To read the blog, please visit http://blog.healthunlocked.com/ on Wednesday 20th.

Merry Christmas and Happy Holidays!

How chronic pain can affect both sexual and emotional intimacy, and remembering that communication is key

This programme is supported by an educational grant from the Tillyloss Trust.

Along with food, shelter and clothing, sexual expression is one of the basic human needs. It allows us to express love and fulfils our need for human connection, but for the 14.3% of people in the UK living with moderately or severely disabling chronic pain, sex can be met with trepidation and anxiety.[1] This is understandable, as it is estimated that 75% of those that live with chronic pain experience sexual dysfunction.[2]

There can also be a certain amount of embarrassment in discussing chronic pain and its effect on sexual activity with healthcare professionals, especially if they don’t have the skills to address these issues. This is why Pain Concern has updated its sex and chronic pain leaflet with authors Katrine Petersen, senior physiotherapist, and Dr Sarah Edwards, clinical psychologist, who specialise in abdominal pelvic pain at the Pain Management Centre, University College London Hospitals NHS Foundation Trust. You can find the leaflet on our website here.

In this edition of Airing Pain, Paul speaks to Dr Edwards and Petersen about the major difficulties patients experience when it comes to living with chronic pain and managing sexual intimacy and techniques that can be used to combat them (you can find these techniques in our leaflet).

Denise Knowles, family counsellor and psychosexual therapist working with relationship support charity Relate, speaks about her experiences of how relationships can be affected not only by physical pain, but by mental pain as well. She also stresses the importance of the distinction between ‘sex’ and ‘intimacy’.

Issues covered in this programme include: Anxiety, dating, gender, intimacy, men’s pain, misconceptions, myths about sex, pelvic pain, urogenital pain, relationships, safe sex and women’s pain.

Contributors:

Denise Knowle, Family Counsellor and Psychosexual Therapist with charity Relate
Dr Sara Edwards, Psychologist, Specialist in Abdominal Pelvic Pain at Pain Management Centre, UCL Hospitals NHS Foundation Trust
Katrine Petersen, Specialist Physiotherapist in Pain Management, Chronic Abdomino-Pelvic Pain at Pain Management Centre, UCL Hospitals NHS Foundation Trust
Meda Minard, Gynecologist from Denmark.

More information:

Pain Management Centre at NHNN, NHS University College London Hospitals: https://www.uclh.nhs.uk/OurServices/ServiceA-Z/Neuro/PMC/Pages/Home.aspx
Relate, relationship support charity: https://www.relate.org.uk/about-us
Brook, charity for sexual health and wellbeing for under 25s: https://www.brook.org.uk/
FPA, sexual health charity: https://www.fpa.org.uk/what-we-do
Vulval Pain Society: http://www.vulvalpainsociety.org/vps/
Pain Concern leaflet, Sex and Chronic Pain.

[1] The British Pain Society https://www.britishpainsociety.org/mediacentre/news/the-silent-epidemic-chronic-pain-in-the-uk/.

[2] Robert Rothrock https://painconcern.org.uk/sex-and-chronic-pain/.

How chronic pain can affect both sexual and emotional intimacy, and remembering that communication is key

To listen to this programme, click here.

Prefer a PDF?Download

This programme is supported by an educational grant from the Tillyloss Trust.

Along with food, shelter and clothing, sexual expression is one of the basic human needs. It allows us to express love and fulfils our need for human connection, but for the 14.3% of people in the UK living with moderately or severely disabling chronic pain, sex can be met with trepidation and anxiety.[1] This is understandable, as it is estimated that 75% of those that live with chronic pain experience sexual dysfunction.[2]

In this edition of Airing Pain, Paul speaks to Dr Edwards and Petersen about the major difficulties patients experience when it comes to living with chronic pain and managing sexual intimacy and techniques that can be used to combat them (you can find these techniques in our leaflet).

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 health care professionals. I’m Paul Evans, and this edition is supported by an educational grant from the Tillyloss Trust.

Denise Knowles: Over the years that I’ve been working in this area, I never cease to be amazed at what a taboo subject sex still is between couples. You know, we’re surrounded by sexuality and yet it’s still a very difficult subject for people to talk about.

Evans: Persistent or chronic pain can impact on lots of areas of life such as work, exercise, socialising and mood. But its effect on sexual activity can be difficult to discuss, or even admit to by the person in pain and his or her partner. Difficulties and embarrassment can also be compounded when one’s health care professionals don’t have the skills and confidence in addressing sexual difficulties. With this in mind, Pain Concern has updated its ‘Sex and Chronic Pain’ leaflet. Its authors are Senior Physiotherapist Katrine Petersen and Clinical Psychologist Dr Sarah Edwards, both of whom specialise in abdominal pelvic pain at the Pain Management Centre, University College London Hospitals NHS Foundation Trust.

Dr Sarah Edwards: Most people who come to see us struggle to talk about [sex] either when we first see them for assessment or when we’re seeing them for regular therapy sessions, either individually or in a group. So [that’s] one of the reasons that we did the leaflet and we’re also writing up a model that we’ve written on working with sex with people with chronic pain. We’re writing it up for publication, partly just to publicize the whole issue, because I think people get very embarrassed, they feel quite ashamed, they feel quite shy about talking about it.

Of course, if they don’t talk about it as an issue, it’s hard for us as clinicians to help them. On the other side of the coin, as clinicians, we’re often quite reticent to bring it up as an issue because we also feel embarrassed and don’t quite know what to say or how to ask. So it’s really trying to open up the conversation, I think that’s the starting point.

Evans: I have to admit that I’m embarrassed as well. I’m a man well beyond my prime [laughter] but it is not a subject I would bring up anywhere outside my household or in front of you two.

Katrine Petersen: As a physiotherapist, I will ask people about various aspects of their lives, in terms of activity. So I’ll ask them about sport, walking, sitting, going out socialising etc. and along that list of questions I have comes intimacy. So I ask about relationships and intimacy and a majority of people are quite willing and relieved that someone’s actually asking about the issues.

Evans: So, what are the issues, you tell me?

Petersen: Often, with chronic pain patients, well number one, they can be on a number of medications that means that sexual activity becomes much more difficult. At times, they don’t even realize it’s a medication that might be causing them to have problems with sex drive. It’s not until you raise it and explain it to them, that they can actually do something about it, rather than worrying about it being another type of issue.

Then, of course, there’s all the physical restrictions that people have when they have pain and things they want to avoid. Ultimately, it’s just like any other activity, if something is painful, you want to avoid it. But over time, what we know is that people then start missing out on something that’s a huge part of their life.

Evans: And I guess missing out on that, it puts huge burdens on a relationship?

Edwards: Hmm, I think it can put a relationship that might be under strain already, under even more strain. All of us hold kind of ideas or myths in our heads about how sex should be and that’s often come from the media, from newspapers and soap operas, and everything else. So all those ideas about sex which should be spontaneous and adventurous and three times a week or whatever it is that you’ve read in the paper, and if people aren’t living up to that ideal, they often feel that they can’t really mention it .If they don’t talk to their partner about it and sex just falls by the wayside, that can lead both partners to feel quite disconnected from each other.

What we see sometimes with people who aren’t in a current relationship, is that they may assume that because they’ve got pain and sex is more difficult than it used to be, they put any idea of being in a relationship in the future on hold, that it’s just not going to happen. That’s such a big part of life that it’s a real loss to shut oneself off from that possibility. We’ll often help them to build up their confidence, so they can consider having a romantic relationship in the future, rather than thinking to themselves that that will never happen.

Evans: So how do you deal with that? Say somebody, well they don’t have to be young, they could be middle-aged, they could be old and not in a relationship and holding back from a relationship, because they feel that whoever they get involved with, the partner will not be fulfilled, it wouldn’t be a fulfilling relationship. How do you deal with that?

Petersen: I talk to patients about activity and it would be familiar to a lot of people who might have worked in pain, or who have been to see pain management clinicians – the idea of pacing and the idea of finding a baseline and then gradually building up. It would be familiar to lots of people, if they want to run a marathon, they’re not just going to do a marathon – they kind of build up for it gradually. They will probably hurt somewhere along the way but that’s a normal part of building up. So I talk to patients about how you build up to activity in the same way, when I talk about sexual activity.

If someone is not in a relationship, it’s about establishing a baseline, what are they prepared to explore? So we do have to talk about words like masturbation and vibrators and stuff that patients can do themselves to work out their baseline – because if they do come across someone whom they might want to be in a relationship with, it’s really important able to explain to them what can I tolerate, this is this is as far as I’m prepared to go at this point in time.

Of course, exploring those myths – just because you meet a partner who looks well, doesn’t mean they don’t have their own issues. It’s surprising how many people do gradually start to realize that actually, a huge part of the population will have some form of sexual issue at some point in their life and that we all have to have strategies to deal with that.

Edwards: There’s a very helpful approach called Sensate Focus, which is used in lots of different areas of sex therapy, which is basically a step by step building up of sexual activity, starting just with physical affection and then moving all the way up to penetrative sex, a lot further down the line. That works really well for people for all sorts of reasons, but again if you’re in a relationship when you have a partner, you need to communicate about that for it to be able to work. That can be embarrassing, so sometimes people will show their partner some written information, like the new leaflet that we’ve done or something else – that’s a kind of starting point to discussing something that maybe they haven’t openly discussed before.

Most people’s experience is that actually their partner may have had some worries themselves about why sex has decreased [such as] doesn’t that person find them attractive, don’t they like them anymore, is the relationship on the rocks? So usually they’re quite reassured by the discussion, even if it is a bit embarrassing.

Evans: But when we talk about discussions, that assumes that couples are still talking to each other and that it hasn’t gone beyond that point of anger, if you like, and frustration.

Edwards: Yeah, I think that’s a very good point and there are all sorts of things that come in the way of a relationship, so it could be pain, it could be difficulties with sexual function, it could be other things and so when we assess someone or when we assess someone and their partner, we will sometimes refer them on for psychosexual counselling or to an organization like Relate, because there may be bigger issues. It may not just be about maintaining sexual intimacy in the context of pain.

Evans: That was psychologist Dr Sarah Edwards and before her, physiotherapist Katrine Peterson of the Pain Management Centre, University College London Hospital.

Well, the charity, Relate referred to there, provide relationship support for people of all ages, backgrounds and sexual orientations, to individuals, couples and families, with any aspect of their relationship that’s not working for them. Denise Knowles is a counsellor, family counsellor and psychosexual therapist working with Relate.

Denise Knowles: Psychosexual therapy works with people who are experiencing sexual dysfunctions or sexual pain or any kind of problems in their sexual relationship. We work with them to work out what it is that’s actually causing them the pain, what’s causing the blocks to them enjoying themselves.

Evans: By pain, you’re talking about mental pain?

Knowles: Mental and sometimes physical, because sometimes in sexual relationships, if people have got other conditions, they’re living with other problems [and] that can cause them pain, so they might not be able to enjoy themselves sexually as they once did. That in itself can actually cause a sense of loss, a little bit of grief, a little bit of angst for the partner who perhaps is not living with any painful conditions. So they will come along just to have a chat about how that’s affecting them psychologically and emotionally, and to find a way forward, so that they can both get what they want.

Evans: Do people with chronic pain come to you for help with getting through their relationships?

Knowles: People will come with all sorts of trigger points and chronic pain can certainly be one of those trigger points. But I think it’s also important to say that some people will come along because they’re experiencing pain that may well have been brought about through the difficulties that they’ve already begun to experience in their relationship, so we have to work out what comes first really.

Stress can create all sorts of chronic pain in our bodies, as can anxiety, and so can depression, so we have to work out what it is. Obviously, when someone is diagnosed with chronic pain, the impact on the couple-relationship and indeed the family-relationship can be immense and often needs to be talked through.

Evans: What are the tensions?

Knowles: One of the tensions can be, someone is living with a chronic condition that’s causing them a great deal of pain, but won’t do anything about it. They won’t help themselves to help their relationship. The ‘non-pain’ person will actually say “Am I not important enough?”, “For goodness sake, why can’t you do something about that?”, or “You’re not the person I married” and “Why aren’t we doing this and why aren’t we doing that?”. So they can start to have quite a lot of frustration and perhaps some resentments, which can lead to arguments and once they start arguing then they can often start blaming and that blame can be very toxic in relationships.

Evans: Now let me go back a little bit, how important is sex to a relationship?

Knowles: That’s a really good question [laughs]. For some, it’s not important at all, for others, it’s uber-important. Then you’ve got a whole raft of people in the middle – yes sometimes it’s important and sometimes it’s not. But I think it’s one of those things in relationships that, whilst it’s happening, it doesn’t matter about the frequency, but it’s happening, it’s ok. When it stops happening or it becomes less frequent and satisfying for one or the other, then that’s when it becomes a problem. That’s obviously when people might come along to Relate to explore what that is all about, so it can be important, very and not at all.

Evans: Explain how you work with a couple.

Knowles: Each couple can be… well, they are unique, there’s no two ways about it. One of the things that is really good about therapy is that we haven’t got a one-size-fits-all kind of answer to their difficulties. Nor do we have magic wands or crystal balls and I think that’s important to say too.

What we will do, particularly in sex therapy, is take an extended assessment. We’ll talk to them individually and that might actually uncover all sorts of really deep-seated beliefs about therapy and also about sex, [e.g.] their attitude towards sex, how they’ve learnt about it, where they’ve learnt about it, what indeed they’ve learned about it, can all influence how they are in their couple-relationship.

Once we’ve got all that sort of information, then we can actually look and say “Well, maybe we need to talk a little bit about this and bring you closer together in your attitudes, rather than actually having you poles apart”. Then what we can do, if it’s appropriate, we can actually then start to give them some kind of behavioural programme to go away and do at home, in the comfort of their own home, and then come back and tell us how they’ve got on with that.

We’ll tweak that programme from there on in, but it’s very much client led. It’s not about the counsellor or the therapist saying “You must do this” and “You must do that” and “What? What’s the problem with that?” there’s no judgment and it’s all very confidential.

I think that’s what helps people to feel safe about actually approaching such organizations as Relate.

Evans: What do you mean by a behavioural programme?

Knowles: If you can imagine, particularly in sex therapy, there will be certain behaviours, this is why we do such an in-depth assessment. If we come across something that may be a cultural or a religious aspect to their behaviours, we have to actually unpick that, particularly in cross cultural /cross religion type relationships, so we’ve got to be very sensitive to each of those things.

But if you can imagine a couple that might have drifted apart because they’re arguing, or maybe there’s pain and there’s this business of not managing it very well, they’ve stopped touching one another, they may have even stopped cuddling one another.

I’ve worked with people that even having a cuddle can be painful, so actually how do you help them to reconnect at a physical level? One of the things that we will do is ask them to put some time aside, perhaps to spend with one another and it depends where their start point is, as to where we take them or where we help them, guide them to actually try different touch, different strokes, different sensations, take sex out of the picture for a wee while, because that can put an enormous pressure on people, but actually just to help them to reconnect, often by just making the time to spend together.

Evans: This brings me a little bit to some of the myths that surround sex, you know, it has to be twice a week, it has to be spontaneous…

Knowles: Oh gosh, that word, spontaneous [laughs]. One of the things that I will often say is, “Spontaneity needs to be planned” and that takes me back to this idea of having time together, because if you haven’t got the time together, then you can’t have sex and if you’re always in a rush, you know, we can’t even have ten minutes of lying down together, because I’ve got to get up and do this and I’ve got that to do and all the rest of it. Of course, that might be a bit of an avoidance and we’d have to understand what that’s about, but actually, we have to have the time.

Once you’ve got the time put to one side, what you do with it can be quite spontaneous, but you can’t start being spontaneous if you haven’t got the time. With the busy lives that we’re leading nowadays, we have to programme or diary in that time.

Once that’s happened, once couples have got time together, it’s important that they learn different ways to be with each other. Now, the way our brains are constructed, it’s a wonderful piece of plastic in here and the plasticity of our brain means that we can learn different things and we’re never too old to learn. So if we get people to repeat things, if we get our clients to actually repeat certain things, then, actually new neural pathways can be laid down, but there has to be a willingness and a determination commitment to doing that. So we will get them to practice different touches, different sensations, even relaxing… people are not taking the time to relax nowadays and so asking somebody to linger a little bit longer in the bath or the shower, they’ll be going “I’ve got this to do or that to do…”. It’s really essential that they learn about their own bodies and how to relax and that way they can then start to share those experiences with their partners.

Evans: That’s Denise Knowles, psychosexual therapist with the charity Relate. Physiotherapist Katrine Peterson again.

Petersen: One of the key things that we need patients to get their head around is how safe is it for me to have sexual activity? There’s no point in building up towards something that patients don’t feel safe, so we talk a lot about [the] chronic pain mechanism, why something can be painful even though it’s not causing harm. That, of course, can have a massive impact on the partner, they can be terrified of hurting their nearest and dearest. So sometimes, we invite the partner in just to hear that talk, and get their head around actually, yes, it can be painful, but it doesn’t mean I’m causing any harm and there are strategies to cope with that afterwards.

Evans: In your group sessions, do men and women think differently?

Petersen: By and large, no, which is to some extent a surprise because we’re bombarded with myths about how men and women think differently. But when you’re sat with groups, it’s exactly the same issues that come up and the same strategies that people need. There’s just an anatomical difference, of course…

Edwards: …and the same worries about what will happen if they can’t have sex regularly, those are very similar for men or women aren’t they?

Evans: Now, the other thing I’d like to talk about is age groups. Do different age groups react differently?

Edwards: I don’t think so. What do you think?

Petersen: You can tell that’s a bit of a hard question, we’re having to think about it…

Edwards: I mean the only difference there tends to be is that our younger patients tend not to be in long-term relationships as much, so they’re more likely to be worried about “Well if I meet someone new, what am I going to say to them? How am I going to deal with it?” Our older patients are more likely to be an established relationship, but they may be single as well. I don’t think there’s much difference.

Petersen: I don’t think there’s much difference. I’m thinking that maybe if a 20 year old says to me “In my relationship, sex is not important, because I’ve got pain and that’s not an issue”, I would potentially, and this makes me sound a bit prejudiced, but I may push it a little bit more.

Then if someone, in the context of their partner being there, or their husband being there, and they’ve come to a part in their life where they’ve decided that actually, penetrative intercourse isn’t important anymore, not because of my pain, but that’s just what we decided. I might be less inclined to push it, because that’s the decision that some people make for all sorts of health issues.

Edwards: We see patients who’ve been married for thirty years and it’s still something that they want to get back to, if it’s been on the backburner for the last few years because of pain, just as much as a twenty-something might want to get back to that area of their life as well, so I don’t think there’s much difference.

Evans: Well, sitting in on our conversation is Meda Minard.

Minard: Yes I’m a gynaecologist from Denmark visiting this clinic.

Evans: You were just commenting that you think there is an age group difference between the attitudes of young people and old people…

Minard: I had a group session, just once, with older women and younger women having pain during sex. The older women are more open and already in this half hour conversation in groups of six, they share their knowledge quite openly and often the young women below 25, I think, are much more shy, that’s very new to me.

Evans: It’s very interesting because we sort of assume, in our permissive society, that sex is common currency in schools and in universities and whatever. You seem to think that it’s, or from your experience, if it is more common, they’re keeping quiet about it?

Minard: Yes and I don’t think they learn so much about sex just being a normal, natural thing. They learn about chlamydia and HIV and condoms and not how it’s a challenge to have sex, it’s not so easy. The older women know that, that it’s not so easy, so they’re more relaxed, maybe.

Edwards: Yeah, I think that, in a way, for the younger generation, there are even more myths about how sex should be and how people should be beautiful and always look good and always have an amazing time. I think maybe when you’re younger, you maybe buy into those myths a bit more, as you’re saying. As you get older, then reality bites a bit more.

Evans: Working with young people and possibly more mature people in the same group, does the influence of the mature person rub off onto the younger person, do they open up?

Minard: I think that if there’s one person opening up in the group and giving her advice to the others, if she has something to share, it’s even better than if I, as a health professional, give them any advice. It’s much better if one of the other women tell the youngest, this is my experience, try this…

Edwards: Definitely, yes. One of the best ways of debunking those myths is for people to have an open discussion between themselves because then, they can really see that sex is not always spontaneous, that people do plan it, that it’s not always amazing, that sometimes people don’t enjoy themselves as much as they’d like to. As Meda said, in a way that’s much easier to hear than if it’s a professional talking at you, so those group discussions can be really helpful.

Evans: That’s Dr. Sarah Edwards of the Pain Management Centre University College London Hospitals.

Psychosexual therapist, Denise Knowles, of Relate again.

Knowles: One of the things that it’s important to make clear here, is that there is a difference between sex and intimacy. But when we start talking about sex, many people are just talking about penetrative intercourse. When we start talking about intimacy, we’re talking about all the luxurious touching and stroking and cuddling and togetherness and the kissing and all of those wonderful things that can take part. Sadly, if people withdraw from that because they’re fearful they’re not going to be able to follow through with the sexual intercourse, then the whole relationship becomes a little bit like a desert and it’s devoid of any of that wonderful closeness and intimacy and that in itself creates problems. So the need is more for intimacy, perhaps, than it is for sex, as we get older and as our conditions change.

Evans: There’s nothing actually quite like a cuddle…

Knowles: Oh it’s wonderful, it’s almost a cure for anything and everything. But of course, there are people that are touch averse and again if someone is experiencing a lot of pain, even someone touching gently their skin could set off all sorts of pain messages to the brain. It’s very difficult then to cuddle. I might be the one that needs the cuddle and I might come up and want to give you cuddle and actually you can’t tolerate that, so you will flinch and I’ll go “Ohhhhh…” and so the distance immediately starts to grow through a lack of communication and understanding.

Petersen: Because of all the myths partly, people think “I can’t really be intimate with my partner unless we go all the way and have penetrative intercourse” so therefore I may completely withdraw.

A lot of patients tell us that they completely withdraw, they don’t like their partner touching them, and they’re worried about kissing in case it leads something that might be painful. So even restoring the ability to have someone to hug you or kiss you could be the first step, just to draw out the intimacy that probably was there at one point, without having to focus on the ultimate act of having sex.

Desensitization is based on the ability of the nervous system to adapt, it’s a neural plasticity that you may suffer with sensitivity to touch but it doesn’t have to stay like that. If that’s also driven by a large amount of anxiety and stress about what this might lead to, then it can be really helpful to have this communication tool whereby you say “we’re just going to do things in a step-by-step manner”. The first step may just be to work on tolerating touch.

Evans: In your leaflet, you give the image of walking on pebbles with no shoes on for the first-time. The first time, it’ll be very painful and then you get used to it. When was reading that, I was thinking of my electric toothbrush and the first time you start using it, it’s unbearably ticklish, but all of a sudden, it’s gone. That’s what you’re talking about, the plasticity of the brain?

Petersen: Absolutely, just that initial new stimuli that you might not be used to and you would expect your nervous system to kind of kick up a bit of a fuss, going “Whoa, whoa, whoa… what’s going on here? Why are you kind of shaking your teeth? Why are you walking on some pebbles that seem unusual, because you’re not wearing shoes?”. So you would expect your nervous system kick up a fuss and if you already have a chronic pain condition, that could be quite unpleasant. But having confidence, which is something that we obviously support patients with, but hopefully also our leaflet will bring the image to mind that actually, in their quest to get to the water because it’s so enjoyable to swim, they will get through that. The more they do it, the more the body will get used to it and eventually the whole nervous system will accept this isn’t actually harmful.

Evans: The ink is still wet on Pain Concern’s updated leaflet on ‘Sex and Chronic Pain’ by Katrine Peterson and Sarah Edwards. You can read it or download it from Pain Concern’s website at www.painconcern.org.uk. Just go to the ‘Get Informed’ dropdown tab and you’ll find it with our other leaflets. The leaflet recommends the charity, Relate for all kinds of resources and support on relationship issues, including sexual relationship difficulties. And Relate’s website is https://www.relate.org.uk

Of course, I have to remind you 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 wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf. And don’t forget that you can download all editions and transcripts of Airing Pain from Pain Concern’s website. Once again it’s www.painconcern.org.uk.

I’ll end this edition of Airing Pain with advice from Relate’s psychosexual therapist Denise Knowles for couples, one of whom has chronic pain, but both partners are aware that something in their relationship is missing.

Knowles: If I have a couple where they’re both aware that something’s missing, actually we’re halfway to getting some kind of result and solution. The problem comes when one person recognizes something’s missing and the other person doesn’t.

But someone living with chronic pain actually has got an awful lot going on for them. They’re having to manage a whole range of different emotions and if they’re not able to share those, they’re so kind of distant, they’re not going to notice something’s missing because they’re so wrapped up in their own world. That can be a bit difficult because the person that feels something is missing wants to say it and bring it to the attention of the relationship without pointing any fingers of blame, without actually saying “If only you would this or you would that…” and without actually hurting the other person.

Couples usually set up what I’ve come to refer to as a mutual protection racket – I won’t say anything to him or her because I know it’ll upset them, so it remains unsaid. In the counselling room all of that has nowhere to go, it’s got to be talked to otherwise, why are you here talking to me as a therapist?

We can gently, gently understand the fears that often the person with the chronic pain is living with, with the disbelief that this is happening to them and putting together their new place, their new status if you like and integrating that into the relationship. Often the person living without the pain has no idea about the fears and the angers and the upsets and the lack of trust, the doubt that the person living with pain is now managing within them, because no-one’s said anything, so that’s what we will do – bring it out into the open, gently, sensitively and without any judgment.

Contributors:

Denise Knowles, Counsellor, Family Counsellor and Psychosexual Therapist with charity Relate
Dr Sarah Edwards, Psychologist, Specialist in Abdominal Pelvic Pain at Pain Management Centre, UCL Hospitals NHS Foundation Trust
Katrine Pietersen, Specialist Physiotherapist in Pain Management, Chronic Abdomino-Pelvic Pain at Pain Management Centre, UCL Hospitals NHS Foundation Trust
Meda Minard, Gynecologist from Denmark

More information:

Pain Management Centre at NHNN, NHS University College London Hospitals: https://www.uclh.nhs.uk/OurServices/ServiceA-Z/Neuro/PMC/Pages/Home.aspx
Relate, relationship support charity: https://www.relate.org.uk/about-us
Brook, charity for sexual health and wellbeing for under 25s: https://www.brook.org.uk/
FPA, sexual health charity: https://www.fpa.org.uk/what-we-do
Vulval Pain Society: http://www.vulvalpainsociety.org/vps/
Pain Concern website, leaflet on sex and chronic pain: https://painconcern.org.uk/sex-chronic-pain-leaflet/.

[1] The British Pain Society https://www.britishpainsociety.org/mediacentre/news/the-silent-epidemic-chronic-pain-in-the-uk/

[2] Robert Rothrock https://painconcern.org.uk.org.uk/sex-and-chronic-pain/

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