Pain Concern

Doctors and patients can both get caught up in an almost endless search for a cure or a clear diagnosis of what’s causing the pain. Searching for a medical solution is understandable, but it can delay people in starting to learn to manage their pain.

With the right support and guidance from healthcare professionals, people can move towards playing an active role in their care, often becoming less dependent on medication.

Top tip: results on MRI scans don’t usually help us to understand what’s behind persistent back pain – many people without pain will have ‘bulging discs’.

Find out more: Pain Concern’s leaflets on medicines, such as Opioids, Antidepressants, Amitriptyline and Gabapentin & Pregabalin have really helpful advice on using pain medications effectively and how to reduce your medications safely.

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Paul Cameron: There’s barriers related to the attitudes of people. There’s barriers related to the understanding of chronic pain and that can be with patients and health professionals, so, for example, patients who have chronic pain but are looking for a cure or are looking for more investigations to find a way to get it cured. They have their own barriers in terms of being able to move forward and actually manage their pain because they’re still looking for that cure, and they’re looking for more investigations, possibly surgery. These are ultimately going to be delays that will stop them really from being able to manage their own pain.

Across specialisms, orthopaedics, neurologists, GP’s, everyone wants to ensure they don’t miss something. You wouldn’t want to be the one that misses something serious, so that’s why these investigations all end up being done for a lot of people in chronic pain.

Steve Gilbert: When we see somebody with pain that has become a problem for the patient, then we’re wanting really to listen to them and find out if there’s something that has started the pain, if there’s anything that we could identify that has made it worse or if there’s anything that’s helped it. And what we look for in medicine are red flags. These are indicators that we might have to do some more tests. They’re not necessarily an indicator that there is an underlying serious problem.

Lars Williams I suppose the bread and butter of the pain service is back pain. That’s probably the most common condition that we see and that’s a situation in which there is usually a clear diagnosis – musculoskeletal or mechanical back pain. There might be an MRI [Magnetic Resonance Imaging] scan that shows wear and tear changes, but it doesn’t really matter – we know the extent of changes on an MRI scan bear very little relation to how much pain people experience.

So, although patients will come to us wanting some further clarification of the problem – ‘I’ve still got this problem. It’s not been fixed. Is there any further test we can do to show exactly where it is? Because if you find exactly where it is, then I’ll be able to have the proper treatment.’ But from our point of view any further investigation would be pointless. In that sense, that particular option… you’ve gone as far as you can in that direction, looking for a diagnosis, looking for an explanation.

Gilbert: If you go on looking for something and doing more tests, what many patients experience is, they’ll get an MRI scan and they’ll be told ‘Oh, look, there’s some disc bulging there’ or alternatively they’ll be told ‘there’s nothing to see on this scan, we haven’t got an explanation for your pain’. And in that situation the patient can feel they’re not believed, the doctors saying there’s nothing really wrong with them.

Williams: The expectation of a patient when they see an orthopaedic surgeon is, they’ve got something broken and it’s easy enough to fix and the orthopaedic surgeon will be operating in a similar mind set. They’re used to dealing with things which are broken. They’re able to see where the break is and they’re able to fix it and everyone goes home happy. So I think what we often see when patients come to us is after having seen orthopaedic surgeons and they’re still in pain, is the sense of frustration that their expectations haven’t been met. That this – whatever it was – as far as the orthopaedic surgeon is concerned, it’s fixed but the pain’s still there.

Gilbert: And of course what we’ve seen on the MRI scan is only the structural components of the spine. Many people get discs that bulge and don’t have any symptoms at all, so when you get to my age, round about two thirds of people have got bulging discs and they’re wandering around absolutely fine – it’s not giving them any trouble at all. But telling them they’ve got bulging discs might plant a wee bit of worry in the patient’s mind.

And similarly, we can’t see what the nerves are saying to each other or the messages they’re sending. So, if we don’t see anything on the investigation, the MRI scan or the X-ray, that doesn’t mean the pain sensing nerves aren’t sending pain messages. Usually, people don’t come and make up pain.

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Williams: The patient’s story is what you’d expect from the referring letter. So often the referring letter would be saying ‘This woman has knee pain. We’ve done everything we can for her knee, her knee looks fine to us but she’s still complaining bitterly of knee pain’. But then when we have the luxury of 45 minute appointments and during that 45 minutes a different story often emerges. It’s not just the knee, that’s a small part of it – it’s lots of other things as well.

Cameron: If any individual has pain that starts to be persistent, that changes and develops over time, it’s absolutely understandable that someone is going to try and find out what it is. Part of our culture, I think – Western Culture – is we’re brought up to go and see our doctor. Our doctor will find the problem, they’ll send you to a specialist, the specialist will cut out the problem or give you the right medication for the problem. When that sort of process doesn’t happen – and it’s one that’s quite ingrained in all of us I think – I think that’s where the difficulties come.

Williams: An orthopaedic surgeon might have said something along the lines of ‘We’ve done everything we can. This is something you’ll have to live with. You’ll have to accept that you have pain, just go on and live your life.’ And it’s seen by the patient concerned as a very sort of glib and unsympathetic way of dismissing them. So it’s quite a hard sell to take that message and present it as something a bit more positive.

Cameron: You’d think well I must be at the wrong specialist, so I’ll have to go back to my GP and try and get to a different specialist and that goes on and on and on, until eventually everyone realises, that actually, there is nothing else that can be done in terms of surgery, in terms of different medications, for example. And the patients themselves come to that realisation, but that can be a long process. Some people come to that realisation very early but others – in the main I would say in my experience – come to it a lot later.

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Gilbert: If a patient has some worries that there might be something serious underlying, then I’ll explain I’ve had a look at you and I’m pretty sure that everything is structurally sound here and I’ve found a good explanation for why you’ve got pain. I’ve found a bit that’s really sensitive and is really tightened up and otherwise healthy, so I think we can go ahead with a rehabilitation approach.

Carmen Murray: To understand my pain, he [Dr Steve Gilbert] said to begin with it would be a massive help to me to understand what this pain is that I’m going through. So like, he was always recommending books for me to read, websites for me to go on… some people might go home and think this isn’t going to help me, [but] it has helped. So that’s what they’ve done to begin with, just tried to be there to support me.

My consultant’s really good. He gives me a phone call every two weeks to see how I’m doing, which is great. You just feel like somebody is on your side, that you’re not trying to battle against somebody, somebody’s there with you, they’re going through it with you in a way.

Gilbert: Carmen had her surgery on her spine and she continues having an awful lot of pain, which was managed with really strong painkillers and when I had a look at her back, there was the scar there, but there wasn’t any pain in the scar, and the muscles were very tight and there was lots of sensitivity. And that was despite her having taken all her painkillers.

Murray: Understanding the problems of being on long term painkillers and how maybe reducing them… to begin with I thought, well, surely if I’m going to reduce the painkillers, I’m going to be in more pain. But then trying to learn that this might not be the case, that my body’s own painkillers will start to kick in and might even do a better job. And I have a lot of problems sleeping, bad dreams constantly and I’ve learned that this could be a problem with the painkillers as well.

Gilbert: The way that the nerves were all working was fine, so there wasn’t any deformity and the nerves were all working and I would say to her ‘Your spine’s quite strong now. We need to try and get things to be more relaxed and less sensitive’. And she’s made a massive improvement just because of that – a lot more confidence in her back and the way things are working.

Murray: What they’ve helped me with is knowledge and just being there to support me through this, is the main thing, just feeling like I’m not completely alone in all this.

Contributors:

Paul Cameron, National Chronic Pain Co-ordinator – Scottish Government
Lars Williams, Consultant in Anaesthesia and Pain Medicine, Glasgow Pain Management Programme
Steve Gilbert, Consultant in Anaesthesia and Pain Medicine, NHS Fife
Carmen Murray

Your GP is likely to be the healthcare professional who’ll be most involved in helping manage persistent pain, but it can sometimes be a difficult relationship. People in pain and their GPs both often feel that there isn’t enough time to deal with a problem as complex as long term pain.

There is no ‘magic pill’ for pain. As with any long-term condition – like diabetes, for example – the best way forward is for people living with pain and their GPs to work together to manage it.

Top tip: make the most of your next appointment by noting down beforehand one or two things that you most want the consultation to focus on.

Find out more: Pain Concern’s Managing Medical Appointments leaflet gives guidance on getting the most out of a consultation.

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Dianne Connor: We’ve been brought up that if you have a headache, you take a paracetamol. You’ve got an infection – you go to the doctor who writes you a prescription for antibiotics. When you have a pain, you go to the doctor, he gives you a painkiller. That’s how everybody believes pain should be dealt with. So I think there’s a huge education problem, from the patient’s point of view.

Graham Kramer: All we’ve been able to focus on is the medical management of people with long-term conditions. And it’s very, very limited. I think it’s creating a huge burden of complexity, in terms of multiple medications and things, for people.

Connor: The one GP that does understand – she’s very good, but I can’t always get her, so I don’t go to the other GPs who don’t understand.

Kramer: The evidence does suggest that it’s socialising our patients into being passive recipients of care. Or socialising them into being in a relationship of learned helplessness on the healthcare system.

Connor: So if I go with another pain or something strange going on and I can’t work out where my pain is coming from, I have to start at the very beginning, and in a 10-minute appointment… [sighs] You’ve no hope.

When you’re diagnosed with something and have a chronic pain condition, you want the magic pill! So somebody telling you – ‘well, basically you have an incurable illness and, by the way, you’ve got to manage it yourself… People would not take that in the beginning, that isn’t what people want to hear. But at the end of the day, that is the way forward; and it is the only way forward is to self-manage your pain. And I don’t know how… I mean, that would have to be very cleverly introduced to people, the way you tell people and when you tell people. ‘Cos everybody’s different.

Kramer: I think one of the difficult conversations I have with my patients is getting them to some sort of acceptance, that I don’t particularly have a solution, but trying to be very positive, that I think that there’s a lot that we can do to help. And that we could help by working through this problem together. And I think I want to emphasise that it is very much… I see myself… and often a lot of my patients that I have – we have a very strong positive relationship anyway – so we can begin to use that and build on it, to try and work through the quite intolerable suffering that they’re experiencing.

Connor: I was at a meeting not last week, the week before, where there were two GPs there. And they were in the group that I was working in. And their definition of people with chronic pain was the golfer who comes along, who’s the nuisance patient, who plays twenty rounds of golf a week, who has hurt his knee because he’s playing twenty rounds of golf a week. I was shocked, because I was sat in this group and that’s how they deemed chronic pain – and I thought, ‘Thank goodness you’re not my GPs!’ But I [also] thought that that’s very typical, is chronic pain is [seen] as a nuisance!

Paul Cameron: It’s easy for me, working in a pain clinic who has the luxury of time with patients, to be able to get a really good understanding of that one particular problem. Whereas a GP may know this patient over a long period of time, so they have the time in that regard, but in individual appointments I think they have, on average, about 7 minutes! And that 7 minutes is based around ‘Do they have something really serious, as in life-threatening, or not?’ And after that I think it becomes very difficult for them to actually manage pain.

I find, certainly for patients with complex long-term pain, that it does require that degree of time to be spent with the patient, partly so the patient feels like they’re understood and listened to. And I think when they go into a GP appointment and then quickly back out again, they possibly don’t feel very well listened to. And having spoken to GPs, I don’t think for one minute that it’s because they don’t want to, it’s just because they aren’t able to in such a busy clinic.

Carmen Murray: GPs aren’t experts, you know, in certain fields and obviously they have an overall knowledge of medicine, so it’s sometimes trying to make them understand when you’re in pain how much pain you’re in. Like previously – now I’m trying to reduce my painkillers – but previously when I was in a lot of pain years ago when asking for more painkillers. And you want to be able to, but you’ve got no way of proving to them that you’re in so much pain.

Sometimes you can sort of feel – I don’t know whether this is just a personal thing – but, worried that they’re sort of looking at you and asking [themselves] ‘are you just looking for more drugs’? And you never wanted to be in this situation on your own, where you’re relying on drugs just to get you through the day…

Cameron: We encourage patients when they go to the GP to be clear about what they want to ask. But sometimes they’ll go with the list. And the list is too long, the GP has to essentially go through the list and almost pick out the ones that he or she may think are the most serious ones – and that might not match what the serious ones are to the patient, because they look at the list and think, ‘Okay… which one of these could indicate cancer? Or something [else] more serious’.

And the patient might think, ‘that isn’t what I wanted you to look at, the most important one was at the top of the list’. And, of course, then you get that mismatch. But it’s a 7-minute appointment, so you can understand why these attitudes start to generate –misunderstandings between the patient and the professional.

Murray: There was one time when she asked me if I was getting pain in my legs. This was about a month before everything was found out. And I explained to her, ‘No, I’m not getting pain in my legs, but I’m starting to feel numb, they’re starting to feel really numb.’ And her response was, ‘That wasn’t what I asked you.’

Cameron: I have to say, I was involved in a pilot in Arbroath in a GP practice that was kind enough to let me invade their practice and try to identify patients that might be at risk of developing chronic pain, just through the medications that they were taking. And what I found really was quite stark – and I didn’t appreciate it until working with them – was just looking at their computer screen: they had half an hour per patient, which I thought isn’t very long, because I’m used to a bit longer with my patients.

But then I saw the lists of the other GPs in the practice and I was just taken aback by the sheer number they were seeing in a day. And at that point I thought it really made sense as to why patients feel like they’re not getting very much time and GPs feel like they’re rushed and they have to prioritise their appointments. And they have to prioritise what they talk about during the appointments, as well.

Kramer: I think we need to have more training in having these different types of conversations with our patients. I went to a workshop recently – a group of very experienced GPs – and we were looking at changing the approach to the management of people with diabetes. The doctors found it very, very hard to change from their traditional role of being in control. And they were trying not to be! They couldn’t help leaping in at certain times and taking control.

Connor: There was this meeting that I was at two weeks ago, where it was about the GPs in Fife to attend. And hardly any of the GPs I knew were there. So, I think, it’s like you can take a horse to water but how do you make it drink…?

They need to look at the whole person and try to understand this person – that this person isn’t a nuisance, that this person needs as much time as the diabetic or somebody with cancer.

Murray: I described the pain as much as I could. I was telling her that I wasn’t sleeping. I was pacing the room. I fell down the stairs at work because my legs were starting to go so weak, you know… I’m not really sure how I could have explained it better.

Connor: We need the same time or understanding.

Murray: What you want from your doctor is somebody who’s actually listening to you.

Contributors:

Dianne Connor
Carmen Murray
Paul Cameron, Physiotherapist
Dr Graham Kramer, GP

Pain can involve a lot of loss – of friendships, work or plans for the future. The emotional impact of these losses as well as of the pain itself often hits people hard.

People with long term pain can find themselves struggling with low mood, depression, anxiety and isolation – this can in turn make the pain worse. It’s important to tackle these emotional impacts of pain as well as treating the pain. This doesn’t mean that the pain is ‘all in the mind’.

Top tip: learn more about pain. Many people find that, like Carmen and Diane, understanding more about their pain makes them less anxious and can help them to start becoming more active.

Find out more: improve your understanding of pain by listening to Pain Concern’s interview with Lorimer Mosley, one of the authors of Explain Pain.

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Marion Beatson: I happened to fall at work and landed on my coccyx. And I have nerve damage between the discs, so the left side is quite numb and the right side is starting to wither the same way. And with that comes a lot of pain.

Dianne Connor: The pain was like nothing else I had ever experienced. I used to pace the floor in the middle of the night… It was like somebody was taking a knife and stabbing my arm.

Carmen Murray: I have chronic pain because I had a tumour which was found on my spine, twisted around my spinal cord, which resulted in numerous operations. My spine eventually collapsed, then it had to be straightened again, which – all the operations and all the stress on my spine – has left me with pain.

Beatson: I had a one-year-old daughter at the time and I couldn’t lift her. I couldn’t get up with her through the night. My whole life totally changed, so my whole family’s life totally changed after I fell. And, due to having the pain, I started to get severely depressed and I had to have help with my daughter. My mum had to come over nearly every day to help me look after Chloe, which was hard to accept. The fact that I was in that pain, that I’d done it all myself, and wasn’t enjoying having a one-year-old child, and then at the fact that I couldn’t do the things for her that a mum should be able to do was hard. Very, very hard at the time.

Connor: I lost my job very early on in this, because I got ill-health retirement. So there’s a huge amount of loss involved. I lost my hobby, because I couldn’t sing and dance anymore, so everything was about loss. I’d never been an angry person, and I suddenly became this really angry person and I was really down, really depressed…

Murray: When my daughter was that age I was a lot more unwell than I am now, so… [sobs]. Sorry. I’m just gonna calm down a minute…

Martin Dunbar: I think it’s fair to say that an awful lot of people with chronic pain develop emotional problems over time, probably 50 per cent of them, I would think. They become depressed. They become anxious. They become panicky when they go out. They become socially isolated. They have difficulties within the home, within family functioning. An inability to perform their normal social roles, if you like.

Murray: Most of the time was sort of spent in the bedroom or on the couch and my daughter was brought into the bedroom with me to spend time with me. Or we would go out, with me in the wheelchair and she would run around and play. [The pain] stopped me from being the parent that I needed to be at that time. It made me quite jealous when I’d see other parents out pushing their buggies and prams, and I was unable to do that because the pain was completely debilitating at that time.

Connor: My son still wanted his mum, you know? He didn’t want his mum to be this person who was falling on the floor and couldn’t get up of the floor… So I became a person that I didn’t know anymore. I was lost, I was completely lost! And I became isolated really very quickly early on, because they were putting me on medication that made me drowsy, sluggish, I wasn’t able to drive, I was stuck in the house here.

Dunbar: When people have pain they naturally cut back on a lot of activities, so there’s the losses involved with cutting back. So they maybe don’t see friends as much, they’re maybe not doing as many things as they would that were important to them previously. But I think also just not having that degree of social contact, not having that degree of involvement, causes people to develop emotional problems. People lose their confidence in social situations.

Connor: People didn’t know how to take me, so people didn’t visit or, if they did visit, they didn’t understand who this person was that I had become, because I was cranky, I was bad-tempered or I just sat and stared into space because of the medication. So I became really socially isolated very, very quickly, very early on.

Dunbar: If somebody has an emotional problem to begin with, when they have an accident – for example, they hurt their back or whatever starts their pain problem – I think it makes it more likely that the course of that problem is going to be protracted. Even if somebody didn’t have an emotional problem to start with, I think emotions start to play a part in the exacerbation and maintenance of a pain problem. There’s a direct link between feeling anxious and feeling depressed and pain, so I have lots of my patients tell me that when they’re feeling stressed, their pain is a lot worse.

Graham Kramer: We often find people have pain for which there is no disease, if you like, that we can cut out or treat or make go away. And for some people, that can be very difficult – for the healthcare professional to admit that and it’s often very difficult for the person to hear that. Because all the messages they’re getting is that there’s some horrendous disease going on – pain is a danger signal – and then the less we find something perhaps people perceive that their symptoms aren’t being validated. And it may be they think the healthcare professional thinks they might be fabricating it, malingering it, or all these other sort of negative associations.

Beatson: He thought I was actually imagining it. He thought I was actually pretending. That’s the way I looked at it. And I came out one day and I just cried because of the ways he didn’t understand.

Kramer: People turn around and say ‘The doctor’s turned around to me and said “It’s all in your head!”’. And I don’t think that doctors do turn around and say ‘It’s all in your head’ but I think that’s often what people hear. And so it becomes really complex.

Beatson: I wanted to hit him, to tell you the truth, because he just did not listen to me. He just told me to keep taking ibuprofen and co-codamol. And I ended up near enough overdosing because I had to take extra to keep the pain – not at bay, but at least a little bit better, to help me cope with life and day-to-day things I wanted to do. I was taking like 12 ibuprofen and 12 co-codamol at the same time – well, in a day, rather. And he never flagged up the fact that I was getting repeat prescription after repeat prescription.

The chemist commented on it one day and she told me to go back and see him again, but when I went back he actually told me to go back to work. He signed me off as sick and went ‘go back to work’, [saying that] I’ll be a lot better when I go back to work and start moving again.

Kramer: People begin to think they’re not being heard or understood. I think it, ultimately, can easily slide into a very dysfunctional relationship and a dysfunctional experience and frustration and anger with the healthcare system that they can’t be fixed.

Beatson: He never listened to a word I said. He did not understand what I was going through.

Dunbar: It’s quite plausible to suggest that some people see depression and anxiety as a natural consequence of having pain and all the limitations that come with that. That can then prove to be a barrier to getting those emotional problems helped and treated, because health professionals might say that this is not going to improve until the underlying pain problem is resolved and I think that isn’t the case. We certainly find that people coming through these programs, where we’re not helping their pain necessarily, these approaches do help their emotional problems significantly.

Connor: I started to be attached to the pain clinics. So, it was very fragmented – I was getting an acute service, I was being treated as an acute patient, but I’d started to still be under the pain clinic, but because of the waiting lists… So during that time they told me to read the book Explain Pain and I think every patient should read that book time and time again. I actually think every patient should be given that book.

The visual description of pain, all these contorted figures describing how pain is – that’s how my pain is! And I thought ‘here’s somebody that’s understanding. It’s explaining to me why my pain is; why I’ve so many strange, odd pains; why it’s gone to different parts of my body. But that’s okay, I can understand that.’

Because if you don’t understand pain it creates fear. And when you have fear, it creates all these all these other huge negative emotions, all these chemicals releasing in the body which actually make your pain worse.

Murray: A big thing for me personally was to learn about my pain. I’ve read some books now about what pain is and that seems to help massively. You have so many doctors that are saying different things to you and sometimes you’re not really understanding what they mean when they’re saying ‘Oh, your back’s firing off signals’ or whatever, you think ‘What does that mean?!’ Whereas now I understand what that means, I understand how pain has occurred, so when I get pain it’s not so scary anymore. I feel like I can understand and I know how to move past it and deal with it now.

Contributors:

Marion Beatson
Dianne Connor
Carmen Murray
Dr Martin Dunbar, Consultant Clinical Psychologist
Dr Graham Kramer, GP

‘You have to want to live again.’ That’s the key to managing pain, according to Diane. It can be a long, winding road, but many people living with pain have learned strategies that help them to get the most out of life alongside their condition, rather than being dominated by it.

Top tip: make pacing more appealing. Start by choosing an activity you find rewarding and enjoyable. Then, build up slowly and steadily to doing more.

Find out more: Pain Concern’s booklet A Guide to Managing Pain is a great place to start learning about the things you can do to manage your pain, including pacing and dealing with flare-ups.

Prefer a PDF?Download

Christine Hamilton: I’m in pain 24/7, so 24 hours a day, seven days a week.

Dianne Connor: It’s hellish pain at times, I mean it’s just a monster.

Helen Rice: I was in a lot of pain, trying to hold on to the straps, or doing all the things that you have to do as a commuter.

Hamilton: It never goes away, it does flare up depending what I’m doing, what activity I’m doing. If I push myself too much, then it flares up more.

Rice: I was struggling and it was becoming very stressful, because if I couldn’t get a seat then I was going to be sore for the rest of the day, and extremely tired.

Connor: I call it the dragon, because it undulates and does so many things and breathes fire.

Rice: I actually went into hospital for three weeks and during that time I learnt a lot about the pain cycle and self management techniques. And, really, I suppose I had the revelation that there was not going to be a pill that would fix this and there was not going to be an operation that would fix this and that basically this is the body that I have, this is how it will always be, but there are things that I can do to help manage that body to make it as good as it possibly can be.

Hamilton: It means that I can’t do the things that I used to be able to do, but I’ve accepted that now, with the training that I’ve been given. I was very fortunate to be lucky enough to be accepted onto the Glasgow pain management programme. And on that programme – it was a ten-week, half a day a week session and we were taught different tools and techniques to help to self manage pain ourselves.

The kind of things were understanding our values, what’s important to us, setting some goals and then from there setting an action plan which would help me become more mobile, more flexible and achieve my goals.

And then after that they gave us a toolkit of different tools to pick on, from things like hot words, using hot words and what they mean to us. ‘So I can’t do this’, ‘I won’t do that’, ‘I’m going to be sore if I try this’. To acceptance, so acceptance commitment therapy, which was a tool that they taught us which I hadn’t come across before, which is around accepting what you can and can’t do, accepting that I’m going to be in pain for the rest of my life now.

Connor: I don’t think you really move on until you accept your pain. Once I was moved on to the pain clinic I got a psychologist. She said ‘there isn’t one day you waken up and there’s a great big banner with balloons that says “acceptance”’. She says ‘you don’t just suddenly waken up and go, “I’ve accepted what I’ve got, I’ve accepted my pain”’. She says ‘it’s a long journey that you’re on and you’ll slip on and off the path, the road will twist on your journey. But in the end’, she says, ‘it’s just a gradual thing’. And that’s how it happened. I can’t tell you the day I accepted I had CRPS and I had chronic pain, it was just a slow progression.

Rice: I had very simple physiotherapy to start with. I was exhausted, I couldn’t do very much at all, but once I left hospital I had a fantastic community physiotherapist who visited me at home so that I didn’t have to get to appointments, which had been a big problem in the past. And we just built it up from there and eventually I was well enough to go swimming, so I swam. I remember going into the swimming pool, hadn’t swum for many, many years, I got in the water and I swam one length and then I got out.

Hamilton: If you change your language to say, ‘I can’t do 10k, but I can do yoga’, so it’s different ways of doing things. ‘I can’t pick this up, but if I move differently I might be able to pick that up.’ So it’s a kind of positivity around your negative thoughts and noticing how often you do that, because they drag you down. So for me probably 80 per cent of the tools that I learnt were around the mind and using the mind much more effectively.

Rice: A few days later I did the same, but I swam two lengths. And I said that once I could do forty lengths, which is what I used to do years ago, that would be a sign that it was time to find the next kind of physical goal.

Hamilton: I think if you don’t have little goals, you’re kind of aimless, you don’t have anything to achieve for, or get out of your bed for in the morning when you are sore. So little things, little tiny goals, like I’m going on holiday this year. So to be able to be planning for next year, or for in six months, or even tomorrow is a huge life change for me, because I couldn’t plan any day before. I didn’t know how well I was going to be each day. So for me I know I can commit to going to London in September and know I can go on holiday in June, so I know now that I can do that. So that’s commitment for me and aiming for things and putting in place different techniques to get me there.

Connor: Somebody told me this early on, that somebody with chronic pain, you only have so many spoons in a day and every day how many spoons you have to use is different and so instead of saying ‘I’m having a bad day’ or whatever, we talk about how many spoons I’ve got. So I’ll say to my husband Paul, ‘I’ve not got many spoons today’ or ‘I feel I’ve got a lot of spoons today’.

So that helped me learn, because I did the typical things. When I had a good day I would just rush about and try and do things and then I’d be bedded and I’d be ill for days or weeks after. So I then learned how many spoons I had in a day and I learned that I could actually start to do things.

I think they use it as pacing as well, but I don’t like that word, because the hospital, everybody was ramming that down my throat, pacing, pacing, pacing. So in our house it’s called ‘the P word’. Because I don’t like that word anymore because it drove me round the twist because I couldn’t learn to pace in the beginning, you know, I would try and do something with my hand and the pain would just be… you know, so I found how many spoons I had works.

So that was how I started realising that in amongst exhaustion, the tiredness, the pain, that if you learn just to do a little bit, then a little bit crept on to doing a little bit more, a little bit more.

Rice: The tactic of pacing is one of the hardest things that you’ll ever try and learn to do. And you almost have to keep relearning it, or I do anyway, because your body and mind, it doesn’t come naturally, I think, to a lot of people. The temptation is always to do a bit more, and then when you have a flare up and you have a bad day it can be very disheartening.

Hamilton: Pacing is really difficult for me. It was something that I hadn’t known anything about before, I hadn’t come across it before, because I was always a hundred miles an hour at everything, so car at full throttle is the way I explain it. And obviously if you do that with a car bits fall off and that’s me, that’s me in a nutshell. I know now that I’ve got to change gears for different situations. I know now that I’ve got to sit quietly sometimes and gather my thoughts and re-centre myself and I use my mindfulness for that and yoga for that.

Rice: One of the things they explained to me in the hospital, we sort of mapped it out, was when you live like that, in the boom-bust cycle, you might start off with having a good day and a bad day. And over the course of time what you end up with is a good day and then six bad days and the recovery time seems to take longer and longer.

Hamilton: For me pacing means if I’m in the office, I don’t wear heels, if I’m out of the office I wear high heels. If I’m in the office and I’m sitting at the computer a lot, we’ve got intelligent lighting so it’ll go off every half hour, so I move. And I don’t just move a wee bit, I’ll go up to the different floor to go to the toilet. So there’s all different things about pacing in there.

It’s about knowing your limits, and not pushing yourself so you have that, you’re fine one day, lying flat on your back the next day, you’re fine the next day then you… So it’s about finding that balance, what we call ‘the baseline’. And then from the baseline it’s like pushing on each, not pushing on, but moving forward each day a little bit more. So I now can do the gym, I can now do, you know, two and a half k walk, but I can’t do a 10k run.

Rice: It is a continual battle to remind myself, you can’t do all the things. Prioritise, I rule my life by an online calendar, where I colour code rest time, as well as activity time and try and stick very closely to that. It’s not always possible, but wherever possible.

Hamilton: Pacing is still difficult for me, it’s something even today, it’s a mind thing for me now, I need to change my mindset, because my mind is still at a thousand miles an hour, but my body is not anymore. So I’ve learnt how to listen to my body, and manage that. But my mind is still a thousand miles an hour. So for me, that’s where my mindfulness comes in and my yoga, I do yoga every morning and at classes at night. So for me that’s when I get that time out. The stopping and then I realise. So sometimes I have to catch myself, that I know I’m pushing too far, or too hard and I just stop. I can just let things go now.

That’s something I couldn’t do before, was let things go. So, for example, when I was doing the garden before I would blitz it in an hour and a half. I can do a bit and go off and have a cup of tea and then do another bit and then come back or maybe another day and do something else, because I still enjoy doing it, but I can’t do it as fast. And I’m not frustrated anymore, that I can’t do it that quickly.

Contributors:

Christine Hamilton
Dianne Connor
Helen Rice

How children can express their pain in art, plus tips for parents

To listen to this programme, please click here.

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‘In hospital. Don’t know what’s going to happen to me.’ These words, written by a child asked to describe her pain after surgery, speak of the anxiety caused by a failure to reassure and explain.

This edition of Airing Pain focuses on the communication challenges faced by children and those caring for them. Producer Paul Evans hears from Alyson Twycross and Bernie Carter – both are nurses and academics specialising in children’s pain – about how these barriers can be overcome using art produced by the children to represent their pain and its effect on them.

Alyson Twycross explains why it’s important for children to be informed and involved in decisions about their care. She also gives tips for parents on helping children recover from surgery and minimise the risk of developing post-surgical pain.

Issues covered in this programme include: Children and young people, communicating pain, family, arts and crafts, post-surgical pain, arthritis, managing consultations, medical research and misconceptions.

Paul Evans: This is Airing Pain, the programme brought to you by Pain Concern, the UK charity providing information and support for those of us living with pain and healthcare professionals. I’m Paul Evans and this edition has been aided by a grant by the Stafford Trust.

Alyson Twycross: When I walk round the ward and see my students, staff nurses would say to me ‘ugh, having the parents here, they make the child worse’.

Bernie Carter: However kind and nice and lovely you might try to be, you’re still an adult and there’s always going to be that power differential between yourself as an adult and a child.

Twycross: We need to educate the parents about the most appropriate way of helping their child cope with painful procedures, because if we’ve not been doing it and they then go ‘there, there child, don’t worry’, then that shoots the child’s anxiety up. And, actually, telling someone not to worry perhaps suggests there’s something to worry about.

Evans: How do children – patients – and adult health professionals communicate with each other when their worlds are generations apart? In the previous edition of Airing Pain I met Zara and Amy, two teenagers in their GCSE years, both living with painful forms of arthritis. They’d been telling delegates at the Northern Ireland pain summit about how their conditions affect their daily lives and in this edition, I want to pick up on something they said about explaining their pain to other people, contemporaries and adults, starting with Amy.

Amy: You find yourself telling the same explanation to everyone. So when people say ‘Why do you have a lift pass or why are you limping?’ And you tell them you have arthritis, there are two responses: either, ‘what’s arthritis?’ ‘or my family member has that’.

So it’s kind of the same story over and over again, but I think that once you tell your close friends, everybody else kind of gets into that ‘Well, she has arthritis, everybody knows that’. Whereas, when I started first year two years ago, I had to tell a whole different year of people that I had arthritis. And there are still people in my year now that still don’t know, but when they ask I’m not offended or angry, I’d rather they ask than be confused, which – I think a lot of people are afraid to ask because they don’t want to offend you. But it’s really not offensive because I’ve had this illness for five years and it’s just kind of a part of my life that I’m okay with, so they should be okay with it too really.

Zara: Even though we’re still quite young we don’t act in the way children would when it comes to it, you know if we have a problem, we’ll tell the doctor, we won’t ignore it and hope for the best [laughs].

Amy: I don’t like it when things are sugar coated when you go to the hospital, which they aren’t usually, the hospital are very good with things like that. They’re very good, they tell it like it is. But when people sort of dance around the subject of your disability, it’s more annoying for us than upsetting because you just want to get to the point. If you have a question ask it and if you want to know something, ask it and if you want to say something, say it, we won’t get offended unless it is offensive, so I think that’s the big thing.

Zara: Uh hum, yeah, definitely.

Evans: So Amy and Zara, both in their mid-teens have the maturity and confidence to engage with their contemporaries and healthcare professionals about their conditions. They don’t like it when things are sugar coated but if they have a problem they will tell the doctor.

Now describing one’s pain is difficult enough for adults, but for children younger and less confident than Zara and Amy, being interviewed by doctors and nurses in a hospital or clinic situation can pose significant communication issues on both sides. Alyson Twycross is head of department for children’s nursing at London’s Southbank University. She also does research in children’s pain management with children, young people and parents. And she faces the same issue in her research as any health professional would in a consultation.

Twycross: One of the issues with the interviews with post-operative children, who were 48 hours’ post-surgery, was that I had to have a variety of different methods because some of the children had surgery on their jaw and they weren’t very keen on speaking to me. I got them to write the answers instead and with the younger children, I used the draw and write technique, which is where you get them to draw a picture and write a few words down and then you talk to them about their picture.

Evans: So, if I were a child, it’s getting a visual representation of my pain.

Twycross: Yep, how it feels to you. One of the things about pictures is that you often get different data to what you might expect. Like one of the pictures I got – and, actually, only two of the children did the draw and write technique and one child clearly didn’t understand the question, so I didn’t use that in my data analysis – but the girl that did draw a picture wrote on it ‘In hospital, don’t know what’s going to happen to me’, which suggested to me that she hadn’t been prepared for her surgery and that wasn’t something I thought would come out of my data. And if I’d just been asking her questions about her pain after surgery, I perhaps wouldn’t have got that information about the fact that she was anxious or worried because she didn’t… no one had told her what was going to happen properly.

Evans: Actually, it sounds really scary to me.

Twycross: If we’re facing new situations and we know a little bit about what’s going to happen, it’s far less scary than just being told that you’re having something done to you. And, actually, [excitedly] I had a crown done on my tooth a couple of years ago and I meant to tell my dentist at the time, that he should have given me better information because I had no idea I was going to have a temporary crown and what it was going to involve, I kind of just blithely turned up at the dentist. That really illustrated to me the need for information so you can prepare yourself for what’s going to happen.

Evans: Dealing with children is obviously vastly different from dealing with adults. How do you get them to explain what’s going on in their minds, their pain and things like that?

Twycross: I’ve got nieces and nephews who range from fourteen down to nine months and, obviously, when I’m talking to them, I’m talking in a slightly different way to the fourteen-year-old than the six-year-old. But the six-year-old, you can have a proper conversation with them, but you have to use words that are within their vocabulary and understanding.

Evan: It’s not talking down to a child, it’s talking at their level.

Twycross: Yep. I think it’s really important not to talk down to them, sometimes adults can appear quite patronising. One of the things I’ve been quite good at is talking to children at the right level. I’m the eldest of five children so maybe that helps but I do sometimes see adults change how they’re talking when they’re talking to a kid. And I kind of think that’s insulting. I don’t know what children think, but they must notice that some people talk to them as if they’re a normal human being and other people appear to be a little bit patronising and maybe talk down to them.

I educate, at the minute, just over 250 student nurses a year here in my department and they’re training to be children’s nurses and one of the things they do is about communicating to children, young people and parents. And they need to know how to communicate with children at different levels of development, different ages, children with cognitive impairments. They need to be able to communicate with children of two, five, eleven, sixteen. There are challenges at sixteen as well as at two.

Evans: I know [in a low voice]!

Twycross:[ Laughs] And also – you’ve clearly got teenagers or are involved with teenagers [laughs] – and also talk to parents and actually, parents have differing needs as well and understand more or less about what’s going on, depending on their experience and education, I guess.

Evans: Do you talk to children with their parents or without their parents?

Twycross: For research purposes, there is a huge… a growing body of evidence – probably not huge – about the pros and cons of having parents there. I usually give children the choice. The study I was talking about, which I undertook in Canada when I was on a sabbatical there a few years ago, the parents were all there. And I think maybe in the hospital setting, that’s not so much an issue but I know that some of my colleagues, who have interviewed children in their own home, when the parents have been there and the brother and the sister have been there, there’s kind of been a bit of interference ‘no, no, no, no – that’s not really what you mean’.

And, actually, one of my PHD students was interviewing a child about their pain and asked the child how much pain they were in and he said ‘five out of ten’, and his mum pipes up ‘no, no, no, no – it’s a two out of ten’, and then he went ‘yeah, yeah, yeah, two out of ten’. So I may have shot myself in the foot about my argument because that was in hospital. But I think there are pros and cons and you need to be aware that the child might feel more comfortable if the parents are there, but are they going to butt in and influence the child’s responses and I guess you’ve always got to have that at the back of your mind.

Evans: One of the things that, as a parent and a grandparent as well, is that I can remember taking my son as a four-year-old to the hospital because he had knocked himself out. And he’d had a row for doing it [Twycross laughs] which made me feel really good. I was more emotionally battered by it than he was and I just wonder if it’s a good thing to have a parent around sometimes.

Twycross: It’s interesting, I think we do need parents to be there in hospital with the children, because I think it does help the children. I remember when I started my first placement in paediatrics when I was a student in the mid-eighties, parents were allowed to stay overnight. And then when I became a staff nurse on the same ward there was a new sister and we had parents on camp beds, so it was a bit of a nightmare climbing over beds to give IV [intravenous] antibiotics in the middle of the night or to see to a child but I think children are better, and the research evidence supports that. But we also need to reflect on how having a parent there impacts on how the child behaves.

We know for example that in relation to procedural pain, like painful procedures, that if the parent goes ‘there, there, don’t worry’, we now know that that makes the child more anxious. And so, if the parents are going to be involved with the child’s care, we need to educate them about the best way of reassuring their children. There’s some research from the US and Canada, where they’ve actually trained parents to use the right kind of words before the painful procedure. And the child’s had far less pain during the painful procedure and been far more settled.

So having parents is a good thing. Finding out about this research in Canada and the US solved a bit of a problem for me because when I walked around the wards to see my students in some of my previous jobs, staff nurses would say to me ‘having the parents here, they make the child worse’. And, actually, knowing that we need to educate the parents about the most appropriate way of helping their child cope with painful procedures, explains that, because if we’ve not been doing that and they then go ‘there, there dear, don’t worry’, that then shoots the child’s anxiety up.

Evans: That’s really interesting because my mum was a nurse and she would say having a parent anywhere near a child in hospital – this new-fangled thought that having mum and dad staying with the child – keep them away, they’re only interfering. What you’re saying now – correct me if I’m wrong – is that sometimes, if I as parent went and gave my child a huge cuddle, what I would think as a supportive cuddle, it’s actually telling the child [in a low voice worried voice] ‘Oh, this is going to hurt’.

Twycross: And actually, telling somebody not to worry perhaps suggests that there is something to worry about. We know developmentally and psychologically that having parents there is a good thing. I’m just doing some sociology of childhood modules and I’m trying to use those modules to understand why we don’t manage pain as well as we could in children.

And I think one of the issues is that if you look at the literature about healthcare consultations, medics and nurses to an extent, will defer to the parents, rather than asking the child. I’m not advocating that we don’t have parents there, but we actually have to be sure that we involve children in decisions, even young children. That we talk to them about what they want, as well as talking to the parents and don’t assume that the children are not competent to be involved in decision making.

Evans: How do you teach your nurses to speak to parents?

Twycross: They have various scenarios. One of the things I used to do in one of my previous organisation which I really liked, in the first year they did a snapshot and it was focusing on communication. There were three or four different people they had to communicate with, so a parent, a child, an adolescent. By the end of their first year, there was jargon they had picked up and we’d do a trial run and we’d go ‘Do you really think the parents or child are going to understand that?’ So I actually quite like that model of assessing them in a skills lab situation so that they can practice their communication and get some feedback in a safe environment. Because if we get the communication right about all aspects of healthcare, children and parents are going to have a much better healthcare experience and it would be less frustrating for the nurses.

One of the things I’ve used in cancer care is setting a pain goal. So they decide at the beginning of their child’s admission to hospital for example, what they want the pain level to be so, two out of ten, three out of ten, whatever, and then they build the pain management plan around that. What I think is great about that is it starts the communication with the parent and the child and the nurse about what they want the pain to be, what pain level they want the child to be at.

We’re not always very good at doing that. In my research, when nurses have communicated with parents, my research in the UK suggested it was when professional middle class parents ask questions about the pain, the nurses would then respond, if the parents didn’t ask questions, the nurses didn’t discuss the pain. In Canada the nurses did talk to the parents but they focused on what pain medications they were going to give. There was no ‘Let us know if your child’s in pain, let us know if the pain medications don’t work’.

So it’s more, I think we need to have an open dialogue, but we need to reinforce it as well. It’s almost like we need to have posters on the wall saying ‘We don’t want your child to suffer unnecessary pain’. And address that public misconception that just because you’ve had surgery, you are going to have moderate to severe pain. Particularly as there is emerging evidence that if you have mismanaged acute post-operative pain, severe pain for a number of days, you are more likely to get chronic post-operative pain, even in children and that’s a significant proportion of children getting it. The first study found that 15 per cent of children got chronic post-operative pain. We are beginning to understand the risk factors, so we should be addressing them and one of those is making sure children are not in severe pain, for prolonged periods post-operatively.

Evans: That was Alyson Twycross, Head of Department for Children’s Nursing at London Southbank University.

Now, 15 per cent of children getting chronic post-operative pain, is a startling statistic, especially if something as basic as good age-appropriate communication skills could help reduce those numbers. So what should we as adults know about talking to children? Bernie Carter is professor of nursing at the University of Central Lancashire and she also works at Alder Hey Children’s NHS Foundation Trust in Liverpool.

Carter: I would use stories, so I would get children to perhaps tell me a story about their pain or if that’s going to be too difficult for them, because the pain is too close to them, is too sensitive for them to talk about specifically, perhaps get them to tell us about another child in pain, so they express it through that.

One of the other ways that I use, that I think can be really successful and the children really quite enjoy, is using art space methods. So that can be as simple as giving a child a piece of A4 paper and a pencil or you can give children a whole range of different crayons and felt tip pens with a load of colours they can use. You can use collage, so you can give them a range of different materials to use such as, bandages and wool, raffia and paper, glue. Materials that have got a different feel to them, like foil, stuff that crinkles, to try and get a whole range of different senses that they can actually portray.

And then we either use sketchily drawn body outlines that are not like the body outlines you can get on a standard pain assessment chart. You put them on something like A3 paper and then give the children the chance to actually build something up – a visual picture, a 3D picture of what their pain’s like. Or you can give them a plain piece of paper and say something like ‘Tell me what your pain’s like, draw it’ use these materials. Sometimes you can work with them if they want a bit of support, but mostly what we do is just leave it to them to make the decisions as to what materials they’ll use.

Evans: It’s one thing for a child to do that but you have to be able to interpret that as well.

Carter: There are ways that you can do to do an interpretation of that, looking at the materials used, the choice of materials, the depth of materials used, the colours they’ve used, the amount of the area that has been covered, how they have actually engaged with the activity. A simple thing, if they are colouring something in, whether they are colouring it in very lightly or they are colouring it in like billy-oh and really scribbling and getting indentations of the colouring in into the paper.

And those are all interesting ways of working, but, for me, the more important thing is using that art space approach, that picture they’ve created, they own, that expresses their pain and getting them to start to talk about it. So ‘what’s going on here?’ ‘tell me what’s happening here’. And in little words they can then start to take you on the journey, to show what’s happening and where things are going wrong for them with their pain and what they want to do about it. So you can get them to talk about which is the most important pain, which is the one they don’t like, which is the one they’ve got most power over, which one they’d like to zap first and that way you can start to get a sense of what’s really important to them.

So for me, their meaning and their interpretation is more important than anything that I as a researcher can actually apply from outside because that’s coming from their world of meaning as a child, rather than my interpretation as an adult with all the expectations that I have. So, for example, one of the studies that we’ve done children used plasters, so we had quite a lot of these little body outlines covered in lots of plasters and we were trying to work out what was going on and the plasters were denoting the intensity and perceived severity of the pain, rather than the fact that there was a need for a plaster or the skin had been broken and there was blood. So a plaster for the children under the age of about nine, meant it was a bad pain. So if we had interpreted it from the outside, we’d have thought there’d have been an injury and there hadn’t actually been an injury in that particular situation. So there again, it was like a figurative use of the materials.

Evans: Thinking about my children and now my grandchildren, who are six and three, when they get involved in their artwork, they live in a completely – not an isolated world – but they really get stuck into it. And to work out those thought processes of why they’re doing such a thing, there’s a tremendous resource there that adults don’t have to describe their pain.

Carter: Although if you give adults art materials, they can do some really fantastic work in expressing pain and it can be a way of unlocking an experience that they’ve not been able to express in words. So for some of the parents of children with chronic pain, who have to live alongside the child’s chronic pain and can feel overwhelmed, desperate and anxious and guilty and a whole range of different emotions as well as feeling very stressed by the care they are having to provide. There are studies that have shown the therapeutic use of artwork for parents. And when you look at adult drawings of pain, there’s resonances that run all the way through so the same sorts of imagery are used, so jagged lined, red colours, things that are seen to be threats, so hammers and hard objects, things that are crashing, so those images are pretty resonant within children’s work as well as within parents’ and adult sufferers’ work.

Evans: I was asked to describe my pain recently and it took me a little bit unawares. And the way I described it was – it’s a sort of general, all-over aching – being enveloped in a beige or grey jelly. Now, actually, being put on the spot and having to think in that way and to describe it to somebody else, I found quite good.

Carter: Yes, I believe children have got a really strong sense of agency and I believe they’ve got a lot of competence and capacity, but sometimes using words can be quite tricky. So when we are using drawings or artwork or collage work or sculpture or whatever, the artwork gives the children a chance to pause and take stock of stuff and then start their drawing. So where perhaps, you were asked what your pain was like, there would have been, possibly not more than a 10 second pause before you felt you had to give an answer because that’s what’s socially polite to do.

Evans: We don’t like silence.

Carter: We don’t like silence. There’s an acceptance with drawing that there can be silence, which means that if perhaps you’re asking a child to draw some of their pains or draw a picture of what they’re life is like having pain, it’s acceptable to say ‘We’re going to give you 15 minutes or we’re going to give you 10 minutes to do this and you start whenever you want’. And they can start to do this and they actually map out those sorts of things that they want to talk about. So I would then do my interview based on those images that they had actually drawn, rather than me asking questions that come from my frame of reference.

And quite often you’ll see in the drawings of children and adults, that there’s a notion of envelopment that’s keeping them away from the world where other people can’t get in because they don’t understand their pain or it’s a fog or a blackness that has kind of got over them. So there are these notions of boundaries that you can see. And the responsible person, if you are being responsible when you are talking to somebody about that, you wouldn’t say ‘oh I can see you’re in a bounded area of grey jelly’, you’d say ‘tell me what you’re telling me, tell me, what’s this picture telling me?’

You have to go a bit carefully with the little kids because they generally expect that you know exactly what. You have to try and work out if it’s up the right way perhaps, but it’s just a device it’s a trigger to get people to be able to talk. I think it’s Goffman that talks about drawings being a ticket to ride somewhere else, so it gives you permission to actually go in. So it’s a very patient-centred way of working.

Evans: I wonder also is it a way of taking the focus away from the child and putting a third person in the painting that you can both relate to?

Carter: One of the things you have to think about when you’re interviewing children or working with children is that however kind and nice and lovely you might try to be, you’re still an adult and there’s always going to be that power differential between yourself as an adult and as a child. And one of the things that artwork can do is mediate that a bit, so instead of me looking politely and directly into the eyes of the child and asking them to tell me something, they can actually talk.

Quite often a lot of my conversations with children are undertaken to the top of the head because they’re still busy drawing, so in that sense it can become like a third actor in the room that becomes a voice for children. Sometimes the children and the parents can be quite surprised by what the child has drawn.

The way that we normally try and express pain is that we use words and words can be powerful but they can also be quite dismissible as well. If a child actually presents you with an image of what their pain is like and it’s black and it’s sad and it’s destroyed and you can see how far the red is over the page, in terms of where the pain goes and that’s said in conjunction with ‘this is what it feels like to be me’, it’s really difficult for people to ignore that, because we are kind of hardwired for these visual images to kind of take notice of that. So I think it can actually give children that sense of validation that they have communicated effectively and people have taken notice of that.

So people will use artwork within chronic pain clinics as a starting point, so instead of starting a conversation with children from a clinical history point of view, the clinical conversation can start from ‘this is what it’s like to be me…’ ‘so, tell me about your picture’. So it becomes a really strong voice that can be filed in the children’s notes. And as children’s pain improves and they develop even more mastery over their pain, or interventions become more effective, their subsequent drawings are likely to act as indicators of progress as well. And that can be useful because sometime your progress might be slow but your drawing actually looks less painful, so you can use that to track children’s progress over a period of time.

Evans: That was Bernie Carter, Professor of Children’s Nursing at the University of Central Lancashire.

I’ll just remind you, as always, that whilst we at 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 professional on any matter related to your health and wellbeing. He or she is the only person who knows you, your circumstances and therefore the appropriate action to take on your behalf.

Now, we heard earlier how the mismanagement of acute post-operative pain, that is severe pain for a number of days following an operation, adults and children are more likely to get post-operative chronic pain. So, what advice should be given to parents of a child going in for an operation. Alyson Twycross Head of Department for Children’s Nursing at London Southbank University

Twycross: I would want the parent to understand that the child doesn’t have to be in pain after surgery, because there appears to be a general acceptance among parents – and the general public as a whole – that because you’re in hospital and had surgery, you’re inevitably going to have moderate to severe pain. Whereas, actually, that isn’t the case.

And because parents appear to have this misconception, they seem to think that if the nurses could do anything, they would have done it. I’ve had children and parents say that to me in the past and because they believe some pain is to be expected, they don’t go to the nurse and say ‘Hey, look, these pain medications aren’t working. Can we increase the dose? Can we try something else? Can we use some of the non-drug methods?’ The way to change practices and to make sure children don’t experience unrelieved moderate to severe pain in hospital is to enhance parent power.

One of the issues though, is that now that a lot of the children have day surgery, they’re home within 24 hours, so it’s the parents themselves who are managing the child’s pain. And if they’re not educated and hold misconceptions and erroneous beliefs about how children behave in pain…. A lot of parents think – as nurses do too – that a child’s behavioural cue is indicative of the pain they are in and we know that’s not true. A lot of parents think pain medications are addictive and have horrendous side effects, for most pain medications, that’s not true.

So, parents when they are with their child in hospital post-operatively need to advocate for their child. And that can be quite difficult, because there are power relationships, but I think we need to find a way of empowering parents to advocate for their child’s pain and jump up and down when their child’s pain isn’t relieved. I think pain should be no more than three out of ten, in the immediate post-operative period. And then when parents are taking their children home they need resources. We also know that parents often have to ring another healthcare professional for advice, usually in the middle of the night, and so I think we need to think of different ways of empowering parents when they are managing their children’s pain at home.

Contributors:

Alyson Twycross, Head of Department for Children’s Nursing, London Southbank University
Bernie Carter, Professor of Children’s Nursing, University of Central Lancashire
Zara and Amy.

How children can express their pain in art, plus tips for parents

This edition is funded by a grant from the Stafford Trust.

Twycross explains why it’s important for children to be informed and involved in decisions about their care. She also gives tips for parents on helping children recover from surgery and minimise the risk of developing post-surgical pain.

Contributors:

Alyson Twycross, Head of Department for Children’s Nursing, London Southbank University
Bernie Carter, Professor of Children’s Nursing, University of Central Lancashire
Zahra Baz and Aimee Gallagher (interviewed during the Northern Ireland Pain Summit 2015).

Putting patients first, and teenage life with pain.

To listen to this programme, please click here.

Prefer a PDF?Download

How can healthcare systems adapt to meet the needs of people in pain? Airing Pain returns to Northern Ireland to find out how the findings of the Painful Truth report into chronic pain will be put into practice.

The Painful Truth had a big impact on decision makers – chronic pain is now recognised as a condition in its own right, healthcare professionals receive pain education and people in pain have a bigger voice in developing their services – but with resources tight and pressure on services, putting the report’s recommendations into practice won’t be easy.

We hear some of the stories behind the statistics. Zara and Aimee, teenagers living with pain, talk about how they cope with the ‘invisible’ illness of pain and rising above the challenges they face in their social lives and school work. Margaret Peacock and Carrie describe their difficulties in getting help from the medical profession.

Issues covered in this programme include: Pain as a condition in its own right, policy, raising awareness, fibromyalgia, GP, society, misconceptions, funding of health services, patient voice, patient experience, waiting time, arthritis, isolation, befriending, volunteering, tendonitis and young people.

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 aided with a grant from the Pain Alliance Northern Ireland. Now, the Alliance brings together all those members of, let’s call it ‘the pain family’, together with members of the Northern Ireland Assembly, to raise awareness of the burden of long term pain in Northern Ireland and to press for improvement in services.

Three years ago they held the first Northern Ireland Pain Summit, to raise awareness of the extent of the problem of people living with chronic pain, the cost to the economy and to highlight to those decision makers key opportunities to develop prevention strategies and services for people with chronic pain. You can download edition 35 of Airing Pain to hear what was discussed and decided in 2012 from Pain Concern’s website, which is painconcern.org.uk.

So let’s spin forward to 2015 and the second Northern Ireland Pain Summit, which was held once again in Belfast. Dr Pamela Bell is a retired consultant in anaesthesia and pain management and she is chair of the Pain Alliance Northern Ireland.

So, what’s been achieved in these last three years?

Dr Pamela Bell: One of the very big things to come out of the last Pain Summit was the undertaking by the Patient and Client Council to carry out a survey of the experience of people living with long term pain and how they felt about the services that are available for them here in Northern Ireland. And that was eventually published in February of last year as The Painful Truth. And that set out a great deal of information highlighting the burden that chronic pain places on our population, in terms of not just the physical handicap of chronic pain, but also the emotional and socioeconomic problem.

Prof Maureen Edmondson: I’m Maureen Edmondson and I have the privilege of chairing the Patient and Client Council in Northern Ireland. The Patient and Client Council was set up to be really the critical friend in the health and social care system in Northern Ireland. And our statutory duty is to listen to the voice of the patient, find out what they’re thinking about the service they’re receiving, or not receiving, and feed that back into the system at all levels.

Evans: Are you a governmental organisation?

Edmondson: Yes, we are. We are part of the health and social care family, we’re funded by the health and social care system, but we have an independent voice which comes from the people we talk to and we talk to thousands of people each year and feed their voices back into the system.

Evans: And when you feed those voices back are they listened to?

Edmondson: On the pain issue we are really thrilled that in fact three years ago we issued the report The Painful Truth and had a number of recommendations in that, because chronic pain was not recognised as a condition within the system, so we were delighted that when we wrote to the minister and sent a copy of the report to him, that actually seven of the ten recommendations in that report were taken up. And so now you actually do have, first of all, chronic pain recognised as an issue and it needs to be dealt with, a condition that has a massive effect on people’s lives, so that’s recognised. There’s now education for professionals in relation to pain and there are also service users involved in the strategies and the care plans in relation to chronic pain. So we’ve moved a long way, now we’re on a journey, and we’re not there yet because this is a big system, and there’s lots of bits of the system, so there’s lots more to go but we’re getting there.

Louise Skelly: I’m Louise Skelly, I’m head of operations with the Patient and Client Council. The Painful Truth was published in 2014 – early 2014 – and basically it was 2500 patient surveys, people who were sufferers of chronic pain told their story. They told their story not only in terms of the impact of chronic pain on their lives, but their experience of health and social care services. And that was a very explosive report in terms of what it had to say, a very human report. Patients and their carers were involved right from the very start in the development of the study and are currently involved in the implementation, the rollout of the recommendations. And that was really fundamental to the work that’s happening at the moment.

Evans: The patient voice, those personal stories, those are the experiences that really make people sit up.

Skelly: Absolutely, they’re so human and also they’re the reality. Some of the patients I’ve been talking to today, for example, said that they found it really hard to just be listened to by their GPs, you know. It doesn’t take money to fix that. We can change attitudes and I think we’re someway along that line, but we have a lot of work to do.

****

Carrie: My name’s Carrie, I’m a 27-year-old.

Evans: So you have a chronic pain condition?

Carrie: I do, yes. I have fibromyalgia, and it leaves me with a lot of muscle pain and weakness and aside from the actual obvious pain and fatigue, it can be very debilitating and very isolating. It leaves me kinda… it fluctuates from day-to-day. I can always feel it, I can always feel pain and I can always feel weakness of some level and I just have to learn to adapt to each day.

Evans: How did your GP help you?

Carrie: [laughter] Umm, I don’t know how to answer that one without disrespecting them [laughter]. I didn’t get much help or support. My mum helped me. I was working as a nurse for the healthcare system and I collapsed in work one day and that was the start of my fibro, and I was bedbound for twelve weeks. And it was only my mum that kept pushing for the doctors and kept pushing that they turned round and said to me that I just had to go to physio and to go to some cognitive behavioural therapy and I’d be fine.

So I jumped through all the hoops for them and I done everything they said and I went back to them and said ‘I’m still no better guys. I’ve done everything you’ve said. Can you please try and help my now?’ And they said ‘here’s some painkillers. This is you, learn to live with it’. And I had to fight even to get painkillers and to get different types and different strengths and dosages. If it hadn’t been for my mum, I think I’d still be lying on the bed in the corner no further forward.

Skelly: One of the big myths is that people with pain are malingerers, they want to go on benefits and all that. This report very clearly showed that the last thing to go is people’s work, their social life will go first, then it will affect their family life, they will do everything but give up their work and it’s the last thing to be impacted. So I think that was a very strong message right across government departments here in Northern Ireland as well.

Evans: What did your Minister of Health say about it, did he have any personal comments himself?

Skelly: At that time it was Minister Poots. What he had to say was that he endorsed the stories there and he said this was a situation that couldn’t really continue. And his department was now charged with taking forward the recommendations which he endorsed. And he issued a letter formally along that line.

Evans: That was Louise Skelly, Head of Operations for the Patient and Client Council in Northern Ireland.

Meave McLaughlin MLA, that’s Member of the Legislative Assembly, is Chair of the Northern Ireland Assembly Health Committee.

Meave McLaughlin: Clearly there is a challenge when we look at the amount of people who suffer from chronic or constant pain in our society. The statistics tell us that one in five people suffer. So there is a very clear need for the system to be able to respond to that need that is there. I suppose on a very human level today we’ll hear directly from patients themselves, from service users themselves. And there are clear messages coming from them all. They’re saying we do need a strategy that looks at the whole area of pain and the types of services and interventions that are required. So that, I think, is the clear message coming out of this today. There has been progress and we need to see the whole issue of how we tackle chronic pain, and constant pain, further up the political agenda.

Evans: The Painful Truth report that came out last year, the Northern Ireland Assembly accepted seven out of the ten recommendations. How are those being implemented?

McLaughlin: Part of the challenge that we have in relation to this issue – and many, many other issues – has been the way our system is currently set up. I think, clearly, in order to be able to fully implement the recommendations coming from that report – and, indeed, coming from many other reports – we need a system that can respond; we need a system that can proactively strategise; we need a system that is very clear in terms of who’s in charge and where the accountability is. We don’t need a system as it’s currently configured, that almost feels as if they are at odds with one another, that there is a certain policy direction and then what happens on the ground is something very different.

So I would be hopeful that, whilst there has been progress from The Painful Truth report, that we will see more once this reform of the system actually kicks in.

Evans: Healthcare is about money as much as patients, sadly. I’m a patient, you’re a politician. One department is cut for another department to take money from them.

McLaughlin: Well I think the first thing I would say say in relation to this is that health is being protected. I think the big issue in health – well, there are two big issues – first of all the dire need to reform the system, it’s overly bureaucratic, it’s complex and there is duplication in the system.

But part of the challenge then is actually where the spend goes. And whilst I think we could all and should all make a case for additional money at times, depending on need, we also need to be mindful of a system that pays 34 million to senior consultants for bonuses, at a time when you can’t recruit the types of frontline staff who could assist, for example, with chronic pain. So there is a clear challenge in the system about moving towards a process that actually is a public health model, that is very patient centred and very patient outcome focused.

****

Margaret Peacock: My name is Margaret Peacock and I represent Fibromyalgia Northern Ireland as a Director for Northern Ireland. Why I’m so passionate about fibromyalgia is I’m a sufferer and have been diagnosed since 1997, so I am indeed living quite a while with the actual illness.

Evans: The fact that you were diagnosed in the first place 17 years ago, you have a diagnosis, that in itself is remarkable.

Peacock: Well, yes, it wasn’t easy let me assure you. I had for two years, as they say in drama, I had busted the boards – that’s not the right terminology – but I had tried every consultant I was told about that may help me, in fact, I saw six privately and on the seventh I was diagnosed with the illness. As far as I’m concerned it took a while, especially when you’re emotionally in torment with pain and you just don’t know what to do the next day. It really is a really, really chronic illness.

Evans: What are you picking up from the politicians speaking and healthcare professionals speaking?

Peacock: Well…[sighing]…if I could give a varied opinion, I have attended many conferences, I have attended many meetings and it’s a struggle and I’m not picking up a great deal, sadly, again that could be a personal opinion, not a professional, but I would like to see movement. And I don’t mean movement in – ‘oh yes, we understand it is quite chronic to have fibromyalgia’ – I mean movement, where people will get together, the powers that be I’m talking about, will get together and do something to help the many sufferers that there are in Northern Ireland.

Dr Anne Kilgallen: My name is Dr Anne Kilgallen and I’m a deputy chief medical officer at the Department of Health here in Belfast. And I’ve been invited to speak at today’s event really to give some insight into the policy perspective on long term pain and our approach to developing and delivering services for people who live with long term pain.

Evans: So what did you tell the delegates?

Kilgallen: What I told the delegates was that probably the most significant impact on our policy has come from The Painful Truth. And the power of that report lies in the fact that not only does it represent, in survey and in statistical form, the realities of people who are living with long term pain, but it also presents the human face because they are very personal and very real stories.

And that report I think made ten recommendations, for me probably the most important of which a recommendation that long term pain would be regarded as a long term condition. And immediately on publication our department, the minister and our department, accepted that recommendation and has moved to ensure that within our long term conditions policy framework long term pain is now considered as a chronic condition.

Evans: What does it mean that chronic pain, long term pain, is a condition in its own right?

Kilgallen: The significance of that framework is that it charges us in health and social care with reorienting our services from episodic care to wrapping ourselves round or supporting people who live with chronic, long term conditions. So it’s a significant policy framework for us and within that then the fact that certain conditions are preeminent allows us to identify populations for whom the policy is relevant.

One of the difficulties I think for people who’ve lived with long term pain is often the difficulty with the diagnosis. Historically pain itself was not considered a diagnosis, the question might be what is the cause of that pain. And so the fact of recognising long term pain as a condition in its own right and of putting it in our policy context, charges us with partnership with patients, partnership with people and with their families. So, developing our services in such a way that they are supportive of the individual in the long term and not just in the episode when they might be particularly vulnerable or particularly in need of a health or social care service.

Evans: So, by giving chronic pain a label – it is a condition – it’s almost like a mandate to politicians that they have to get it sorted.

Kilgallen: I think the reality is that – and many people have said this before me – is that a problem isn’t a problem until it is named. And so in fact, yes, it is true that recognising chronic or long term pain as what it is, a long term condition in its own right, does allow us to formally think about the services we provide, and particularly this issue of supporting people in their daily lives and of really supporting them to self-manage. I think that’s really the point of what I’m describing, is that rather than an individual coming to us for a service, the reality is this individual needs to be supported and helped to manage the condition themselves, with occasional or regular support from professionals and that’s a partnership approach.

****

Tricia Bowers: My name’s Tricia Bowers and I’m the Training Services Manager for Arthritis Care Northern Ireland and we deliver self-management programmes for people in the community who are living with long term painful conditions.

Evans: You were involved in the workshops earlier, what was your task?

Bowers: Our task was to look at self-management and come up with an idea, or a feel for, what does good self-management look like, and then identify three or four priorities that we would like to have processed at the top of a list, if there was a wish list for self-management.

Evans: Well Arthritis Care is already involved in very, very good self-management programmes, what were the findings of your discussion?

Bowers: You’re quite right, we are at the forefront of delivering within the community sector, and we get our funding from health trusts. We had a number of patients who are living with chronic pain, including myself, around the table. And they were talking to us very much about the frustrations that they have to live with, in terms of waiting times for appointments to see a health professional, even their GP, some of them were saying they might have to wait up to three weeks to get a GP’s appointment, much longer for a rheumatologist or a pain clinic appointment. And the fact that when you’re living in long term pain like that, it is what it is, it’s a long term condition, and it doesn’t go away, it doesn’t necessarily get that much better and it’s really frustrating to be told that you might have to wait 18 months before you will be able to see someone who may be able to help you to manage the pain better.

Evans: I think it’s very important to know as well, that it doesn’t matter what the long term condition is, there are things that we all feel, the frustration, the daily grind and the feeling alone.

Bowers: Absolutely. And, in fact, within Arthritis Care right now we have developed a project whereby those people who are so isolated that they can’t attend community settings, we now have a one-to-one befriending service called Staying Connected, where we have trained volunteers, who also have a long term painful condition, will go out and visit the people in their own homes and talk them through the self-management programme, talk them through – as you say – the small changes that people can make to help them deal with the difficulties that they are having to live with on a daily basis. Whether it’s the pain, whether it’s the fatigue, depression, low mood, all of those things. And that’s turning into a very, very successful project currently.

****

Zara: I’m Zara.

Aimee: I’m Aimee.

Evans: Zara and Aimee you’ve just given a fantastic talk to a room of 150 health professionals and you communicated what you go through with your chronic pain on a day-to-day basis. [Zara: yup] Aimee, tell me what you told them?

Aimee: I was just discussing my illness – and what I have is junior idiopathic arthritis – and just how I deal with it on a day-to-day basis and how it affects my life. So, my social life and family life and school life. And how it restricts me from doing some of the things I want to, and also how I get around the restrictions that it causes.

Evans: So how does it affect you?

Aimee: I struggle with stiffness in the mornings, so getting to school is quite a difficulty with stiffness, getting the bus, getting in on time and then once I do get to school, with the pain, it’s hard to concentrate in class with fatigue and pain together. And then when you get home you’re not really in the mood to go out because you’re so tired and drained from the school day. So your social life suffers from that aspect. And while you’re at home you isolate yourself when you are in pain, so that also affects your family life in that way, where sometimes even when you are with your family you’re not quite 100% yourself.

Evans: Zara, how does it affect you?

Zara: Well, because I not only have arthritis, I’m missing the three fingers from my left hand and a joint in the middle finger of my right hand and then I’ve developed tendonitis in the tendon along my right arm, it definitely makes things a lot more difficult. I describe myself as feeling like the tin man from The Wizard of Oz, when he was first found by Dorothy, because he needed the special oil that he had to relieve him of pain and stiffness. The only difference being that I don’t have the special oil.

I talked about how it affected me when I was doing my GCSEs, because I had to get a laptop so I could type up the majority of them, as well as having to take a break every 45 minutes, just to stand up and stretch because it began to affect my knees. And getting up and down off of the bus, because with my bag on my back and the files in my hands, I don’t always feel like I can support my weight, which is definitely not helpful because then I tend to hold people up behind me on the bus.

Evans: You’ve had the opportunity, and you did it very well, to speak in this Pain Association Northern Ireland summit – and there were a lot of health professionals, there were politicians there as well – what message do you think that they took from what you told them?

Aimee: I hope that, obviously, not just adults suffer from chronic pain, that it affects everyone and usually in the same kind of way that it does with adults, but there are obviously some differences in teenagers dealing with chronic pain and adults dealing with it. But, you know, it affects our school life, rather than our work life.

And I think a big thing with teenagers dealing with chronic pain is that they are embarrassed by it sometimes. I remember in the beginning if I had a limp one day, I’d be embarrassed limping up the stairs, that somebody would see me and think that there was something wrong with me, but I think once you’ve had it for a certain amount of time that doesn’t really bother you anymore.

You know there’s people who are like ‘you don’t look sick, so why are you saying that you’re sick’. I think that’s one of the big things with invisible illnesses, nobody can really tell that you’re sick until you tell them. So I think it’s just one of those things that I hope that they understand that we are affected just as severely as any other person who’s affected by a chronic illness. Yeah, I also hope that they enjoyed the speech, because I put a lot of effort into it. [laughter].

Jillian Coward: I’m Jillian Coward, I’m a patient with rheumatoid arthritis, which I have experienced for over 30 years.

Evans: What have you heard this morning that excites you or disappoints you?

Coward: I’ve heard some very moving stories about people’s experience of pain – and quite an age range of pain – that’s been very informative. People don’t realise that it can affect young people as well as older people. I’ve heard a lot about change within our health service, particularly here in Northern Ireland, and how there is an awareness amongst our politicians and amongst our health professionals about getting people out of their silos and remembering that pain connects patients across very wide user groups. I’m hoping that events like this will lead to better understanding about treating pain.

Evans: The Painful Truth document that came out last year, has that changed the way service users are treated?

Coward: I think that document has had a very wide reach in political circles and in the health professionals field. And I think if you are aware of it as a service user – I’m very involved with Arthritis Care and we became aware of that document – it’s a shared vision that we have, we’re trying to achieve those goals that are outlined in that document. And when you’re either talking about your own situation in a patient situation, you can perhaps reach better outcomes because you’re aware that the GP you’re talking to, or the physio you’re talking to is aware of the goals and targets that we’re all trying to do.

I think for a service user with chronic long term pain, you have an enormous amount of contact with the health service and often you know as much about your condition as the health professional you’re dealing with. And so knowing what’s achievable is important for both of us and that document has helped in that way.

Christine McMaster: I’m Christine McMaster, I’m a public health consultant and together with my colleague Maria Wright, we lead the Pain Forum in Northern Ireland. Which is to take forward the recommendations from the scoping report we did in response to The Painful Truth.

Evans: I’ve heard the word ‘scoping’ many times today, tell me what ‘scoping’ is?

McMaster: In plain English it’s to look at what range and quantities of services for people with pain we have in Northern Ireland. And the picture that we uncovered was a very mixed one. We had a little bit of everything, but not enough of anything anywhere, huge variation and therefore inequity in services for patients with pain across Northern Ireland. Some health and social care trusts were relatively well equipped, others were lacking in bare essentials.

Now that we have that picture it is relatively easy to identify all the things that need doing, to do all of those would cost an enormous amount of money and we need to start somewhere. So we are currently working, with colleagues across Northern Ireland to identify priorities. And what I think is going to emerge is that we invest in more self-management in communities initially and at the same tie develop capacity in primary care. We also need to find funding to close the huge gaps in our hospital services and I suppose there will be some opportunism in having plans for all of those things and then moving forward with what attracts the resources initially and that’s not entirely in our own hands.

Evans: No, but short term planning, ploughing a lot of money into something now, like self-management, will save an awful lot of money in the future.

McMaster: You’re talking to a public health practitioner and that’s exactly the message that I would put out first, prevention is better than cure, but we must be mindful of the fate of tens of thousands of people in Northern Ireland who live daily with very severe pain, who do need help. We have a duty to care and we do need to equip our colleagues in hospital services, and in primary care, to help those patients. Everything is a balance act and a compromise, so the agenda is huge, otherwise we couldn’t have spent a whole day talking about it. We’ll have to make choices, but I think that will become clearer as we work.

Evans: Christine McMaster, Leader of the Pain Forum in Northern Ireland.

I’ll just remind you, as always, 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.

So at the end of the second Northern Ireland pain summit, a lot of words have been spoken, lots of ideas developed and experiences shared – final words to Pamela Bell, Chair of the Pain Alliance Northern Ireland.

Bell: I’m just staggered at the amount of work that has been done today and the number of messages. First of all, I’m really pleased at how well engaged the patients are and I want to take some of that energy going forward, because it’s their voice that really seems to make the difference here in Northern Ireland.

I’m also so pleased that healthcare professionals are continuing to follow us on this journey. And seeing many faces here today that were at the original pain summit and knowing where they have progressed in terms of how they’re delivering the services. So that has been absolutely fascinating. We’ve learnt a lot, I think, from what is going on and the journey that Wales and Scotland are undertaking. I think we’re dragging a little bit behind them, I must admit, despite the progress that we’ve made, but it is heartening to know that they’re still continuing on their particular journey.

Out of the workshops we have a lot of work to take forward. And I think that what we need to do now is take a little sit down with those who ran the workshops and determine who takes which strand of the work forward. But I certainly feel we’ve got a mandate to push ahead with the educational organisations, with our health and social care board, with our department of health, with the health assembly, to encourage them to create the atmosphere where change for the positive benefit of patients can happen. So, yes, I’m delighted, but almost too much coming out of it to encapsulate in a few words.

Contributors:

Dr Pamela Bell, Chair of the Pain Alliance of Northern Ireland
Prof Maureen Edmondson, Chair of the Patient and Client Council in Northern Ireland
Louise Skelly, Head of Operations at the Patient and Client Council in Northern Ireland
Carrie
Meave McLaughlin, Member of the Legislative Assembly of the Northern Ireland Assembly Health Committee
Margaret Peacock, Chair of Fibromyalgia Support Northern Ireland
Dr Anne Kilgallen, Deputy Chief Medical Officer, DHSSPS, Northern Ireland
Tricia Bowers, Training Manager, Arthritis Care Northern Ireland
Zara
Aimee
Jillian
Christine McMaster, Pain Forum Northern Ireland.

Putting patients first, and teenage life with pain

This edition is funded by a grant from the Pain Alliance of Northern Ireland.

How can healthcare systems adapt to meet the needs of people in pain? Airing Pain returns to Northern Ireland to find out how the findings of the Painful Truth report into chronic pain will be put into practice.

We hear some of the stories behind the statistics. Zahra and Aimee, teenagers living with pain, talk about how they cope with the ‘invisible’ illness of pain and rising above the challenges they face in their social lives and school work. Margaret Peacock and Carrie describe their difficulties in getting help from the medical profession.

Contributors:

Pamela Bell, Chair of the Pain Alliance of Northern Ireland
Professor Maureen Edmondson, Chair of the Patient and Client Council in Northern Ireland
Louise Skelly, Head of Operations at the Patient and Client Council in Northern Ireland
Carrie
Meave McLaughlin, Member of the Legislative Assembly of the Northern Ireland Health Committee
Margaret Peacock, Chair of Fibromyalgia Support Northern Ireland
Dr Anne Kilgallen, Deputy Chief Medical Officer, DHSSPS, Northern Ireland
Tricia Bowers, Training Manager, Arthritis Care Northern Ireland
Zahra Baz
Aimee Gallagher
Jillian
Christine McMaster, Pain Forum Northern Ireland.

How to break the links between poverty, pain and unemployment

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In the second programme in our Good Work double bill we hear how people in pain and their families are affected by barriers to employment and support.

Kieran McGhee and his wife Anne-Marie tell how his neuropathic pain and a lack of ongoing support put an end to both his career and hers as she became his full-time carer. Angela O’Neill recalls having to leave the nursing job she loved and her ‘distressing’ experience of a poorly managed back to work scheme.

Staff at the Health and Social Care Alliance set out how the Access to Work programme can help people managing long term conditions to overcome obstacles to getting to and thriving in the workplace. And Jason Leitch of NHS Scotland discusses the ‘Glasgow Effect’ – Scotland’s largest city’s inequalities of health and life expectancy – and how to reduce them.

Issues covered in this programme include: Employment, poverty, financial impact, barriers to the workplace, carers, inequality, access to health services, social care, Glasgow City Mission, community healthcare, funding, welfare, benefits, financial support.

Paul Evans: This is Airing Pain, the programme brought to you by Pain Concern, the UK charity providing information and support those of us living with pain and healthcare professionals. I’m Paul Evans and this edition is being supported by a grant from the Moffat Charitable Trust and assistance given by the Scottish Government.

Jason Leitch: There is a link between deprivation and ill health and there is an inequality therefore between the non-deprived and the deprived, for lack of a better description. People come from all over the world, unfortunately, to study Glasgow because of the Glasgow Effect – from the leafy suburbs in the West around the university and the East End where my grandmother lived all her life and where my mother was born, there is a mortality inequality of 15 years in men and even longer in women and that happens within a space of four or five miles.

Evans: People living with disabilities or long-term conditions experience a 50 per cent higher rate of unemployment compared to the rest of the population. In the last edition of Airing Pain, we looked at employment or rather unemployment issues faced by people with chronic pain. In this edition, I want to find out whether financial hardship – from unemployment or living in areas of deprivation – affect the treatment those living with long-term conditions receive. Professor Jason Leitch is Clinical Director of the Healthcare Quality Unit of NHS Scotland – so if you have more money, do you get better treatment?

Leitch: Absolutely not, I don’t believe, if you have more money, you get better treatment. I do believe – I think there is very good evidence – that the poorer you are, the harder it is for you to access care and the more challenging, therefore, your long term condition can be. Now that’s a general statement – there are examples of people at either end of that spectrum who are the opposite of those extremes – of course, there are. But, generally speaking, if you have a long term condition – diabetes, asthma, chronic pain, any of these – remember going forward now, most people have more than one, it is now more common to have two chronic conditions than one condition, so that changes the whole face of the way we deliver care.

If you have a chronic condition and you are poor, you are likely to be treated later, you are likely to struggle more and your treatment is likely to be less effective. Now, that is not universal – so we should not condemn all of that – but there are multiple reasons for that – some of which are systems-based, inside our delivery and some of which are based inside the society.

Evans: So people on low incomes, what are the barriers for them, getting good care?

Leitch: I am conscious of generalising and it is a very, very dangerous thing to do in health care because there will be people listening to you who will be saying ‘I’m poor and I’m perfectly adequately treated and I am perfectly able to access care’. In general terms, people who are poor often have long-term anxieties about other things in their lives – chaotic lifestyles, families, housing that might be damp, difficulty with green space around where they live, schools – everything else that is going on in their chaotic lives, in general terms. And that makes access to ordered, systemised healthcare challenging.

I could also point to middle-class house-holds with drug-addicted teenagers, with broken homes, with other general social issues where those access issues are very common as well – so don’t presume that poor means bad treatment – that is not what we are saying. But, inequalities, there is no question that particularly in our urban centres – Glasgow is the classic example – there are morbidity and mortality challenges as you get poorer. In Glasgow, that generally means, as you move east in the city, you die younger and we have known that for decades.

Evans: Is education one of the major issues?

Leitch: Education of what?

Evans: Education in terms of what is available health-wise?

Leitch: Yes, but it is a very weak intervention, so just going into the community and teaching them is a very, very weak intervention…

Evans: Education isn’t just teaching, it is having the ability to find stuff – it’s libraries, it’s information in clinics, things like that.

Leitch: Anything that increases the ability of a user with a long term condition, like chronic pain, to access local services for them in their locality is a good thing. So if that is about using the community’s own assets such as the shops in the street, the banks, the pubs – I don’t care – anything that increases the availability of local community assets to be able to help those with challenging conditions is a good thing. The classic example that comes to my mind is ALISS, which is fundamentally a local resource, a collection of local elements which are then available to the General Practitioners to direct individuals to. It is a direct way, it effectively says ‘there is a yoga class at 4 o’clock in that community centre; there is a prescribing help thing that helps you with chronic medication services in this pharmacy on Tuesdays at 8 in the morning, or whatever. And some of those local community assets are not known, to the healthcare professionals never mind to the communities and anyway of making that more accessible has got to be a good thing.

Evans: Jason Leitch and ALISS stands for ‘a local information system in Scotland’. Kieran McGhee was an academic high flyer until chronic pain put an end to all aspirations of a successful career. He lives in the former steel town of Motherwell, near Glasgow with his three-year-old daughter and wife Anne-Marie.

Kieran McGhee: It’s chronic, abdominal pain.

Anne-Marie McGhee: It’s in the liver region.

Kieran McGhee: Yeah, it’s kind of just above the liver.

Anne-Marie McGhee: They think it is probably nerve pain of some description, probably caused by some damage from a previous illness. And, to add to that, we now have a lovely neurological disorder wreaking havoc which effectively means that the right hand side of his brain is no longer sending signals to the left hand side of his body, so he is intermittently paralysed.

Kieran McGhee: I get a standard migraine, where you have abject pain, it just shuts off the muscles…

Anne-Marie McGhee: …and stops sending signals to the body. He worked full-time, he went to university.

Kieran McGhee: mmhhmm I worked full-time, I was on a career trajectory.

Anne-Marie McGhee: Doing a PhD.

Kieran McGhee: Yeah, I effectively had a whole career planned in front of me and I still have, a wonderful family.

Evans: Anne-Marie, you are Kieran’s wife. Are you the breadwinner of the house?

Anne-Marie McGhee: I was until the start of last year and the opportunity presented itself for me to leave employment and it had become apparent at that point, that it was probably a good decision to make, for Kieran’s sake.

Evans: Do you miss work?

Anne-Marie McGhee: Yes

Evans: So one illness has cost two careers. Can you see yourself getting back to work?

Anne-Marie McGhee: Unless Kieran’s condition improves dramatically, which we have been told not to expect that to happen, I think I am going to be probably a fulltime mum and a fulltime carer.

Evans: Have you had any help in getting back to work or freeing yourself up a little bit?

Anne-Marie McGhee: No. We certainly haven’t come across services, that as yet, are prepared to help us out on a day-to-day basis. Now, I went for an interview with the employment support people and they were offering very basic get back into work courses, which to be perfectly honest, given the job I was doing and the career that I did have – it seemed like, are you actually kidding me here? That seemed like getting someone back into a job where you were earning barely the minimum wage – I was earning a lot more than that – are you actually kidding me on here? I know how to write. I know how to put a CV together. I don’t need educating on English or maths and that was pretty much all you were wanting to offer me.

Evans: Did you do that course?

Anne-Marie McGhee: No.

Evans: Has anybody taken into account what you are capable of or how high you could fly?

Anne-Marie McGhee: No. They came across as very pleasant, but the only thing they were particularly interest in was basically, not having an additional name on a book, saying that this person is effectively a benefit claimant – that is pretty much all they are interested in. You don’t get a choice when you have to be a fulltime carer. You need to be financially supported, but you also need services in place that allow you time-out. Whether that is somebody coming into the house to make a meal for severely disabled people or if it is just simply offering access into intelligent education – education or courses that are going to you know, work your brain.

Evans: It seems incredibly judgemental to assume that you are out of work, therefore, you can’t count and you can’t write.

Anne-Marie McGhee: Yes. I think everything is aimed at the lowest common denominator, which sadly writes off probably 95% of those who are out of work because they have to look after somebody.

Evans: What sort of process, of paperwork or interviews or whatever, did you go through to get any grant that you have.

Anne-Marie McGhee: Lots and lots of filling out forms, ESA (Employment Support Allowance) was the first one and then we had to reapply as a couple for ESA and then PIP (Personal Independence Payment). The paperwork, the questions – there are literally pages and pages and pages – and they don’t always make sense.

Kieran McGhee: I am university educated. I’ve got two degrees and a PhD and we ended up going to the Citizen’s Advice….

Anne-Marie McGhee: No, it wasn’t Citizen’s Advice – it was the Tax and Social Work Department for the PIP one, because it was so horrific, we got referred to them and they then went through the form with us and they then came out to the house and assessed and helped us to say – well, actually, you need help – they were brilliant! It took us, seven months to get all of the benefits that we were entitled to put into place.

I dread to think how other people would have coped if they didn’t have something as a net, because you would be potentially – no income, no benefits, no housing benefit, no nothing. And it took seven months from the point of ESA being awarded to the final PIP award payment being made and I’ve heard that in some cases, PIP took twelve months to put in place. It is a damning indictment on the way that anyone with a disability is treated in this country, right now – a damning indictment.

Evans: PIP is the Personal Independence Payment and there is information on how to get help with PIP applications in edition 62 of Airing Pain. You can download that and all editions from the Pain Concern website which is painconcern.org.uk. Now, Kieran McGhee’s career was over before it started but, many people with chronic pain are able to have fulfilling careers. Angela O’Neill has had chronic pain for many years. She was a nurse until two years ago when managing her condition whilst, doing a demanding job, became impossible, but as you will hear, she shares her frustrations of the system with the McGhees and many others in the same situation.

Angela O’Neill: I tried to keep working as long as possible. I worked part-time. I changed my job from being a clinical nurse, a sister on a busy intensive care unit to clinical nurse teacher, which meant I was working shortened days and I was managing. But in the end, I was just pushing on and not enjoying the rest of my life. I managed my work but by the time the weekend came, I was just exhausted. I was sleeping all weekend and getting up for work again on the Monday. I worked alternate days so I was sleeping on the days in between. I was absolutely exhausted. I was having problems with my memory, which was very difficult when teaching – sometimes having fogs come over me – I don’t know whether this was due to the medication or the disease process.

I began to see that I couldn’t do the job that I was supposed to be doing and I thought I was in a dangerous position, looking after people’s small children. So I decided that it was time to retire from my work, my job. It was the hardest decision of my life – nursing was me and I found it very difficult to think that I wasn’t going to be a nurse any more. I kept my registration until just recently because I always thought that there might be a chance that I would go back. I thought that I would miss it so much.

Evans: Did you have to go through all the processes, the assessment processes?

O’Neill: No, fortunately because I had been nursing for so long, that I could actually retire at 55, so it was natural retirement. I didn’t retire on ill health, so I didn’t have to go through that process which would have been probably a different decision, if I had to…

Evans: What do you mean?

O’Neill: I had been off work, coming up to six months. I had to sign on and go to the Job Centre and have interviews on how to write a CV even though I was intending going back to my job, back to my own work – I was asked to attend to make a CV. I had been in the same job for 37 years and never had a CV. I didn’t really understand why I needed to have a CV when I was going back to my own job at the time.

And then I had to attend an interview in Glasgow which was very intimidating – it was a medical by somebody that didn’t speak very good English. It was absolutely awful and then at the end of it, they said that I was fit to work. I knew that I was fit to work but I wasn’t fit to do the job that I had been doing and I was waiting to get my health back following surgery so that I could return to work, so having all these interviews was very distressing. I think if I had to have to go through that process again, it might have been a difficult decision.

Evans: Did you feel in some ways, that you were a grey person, a box on a tick sheet if you like?

O’Neill: Definitely, I had to keep attending the job centre even though I’d got a job, the Works and Pensions Office, places that I had never been before. It was just so difficult, not feeling well and having to go through that. It was very difficult for my husband as well, who took me – he was very angry, he felt intimidated and when I came out sobbing – I am not a person that cries very easily and I came out of the office absolutely sobbing – he just was really upset and frustrated by the whole process.

Evans: That’s Angela O’Neill. I’ll just remind you that, as always, while we at 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, your circumstances and, therefore, the appropriate action to take on your behalf.

Now, if as has been stated there is a link between deprivation and ill health, as in the so-called ‘Glasgow Effect’ – could third sector organisations, that is charities like Pain Concern, in fact – help break that link. Here’s Clinical Director of the Healthcare Quality Unit of NHS Scotland, Jason Leitch again.

Leitch: I am a big supporter of the third sector. I spend quite a lot of my time visiting the third sector organisations and I am trying to boost that community asset approach inside those local communities. But there is a challenge and the challenge is variation in delivery.

So, in Glasgow, the last time I checked, there were 86 organisations dealing with addiction. Now, they are all very worthy, I know them, some of them quite well – I have a personal family connection to the Glasgow City Mission, for instance, which deals with homeless people, some of whom are addicts – so that is a very worthy thing. The Salvation Army is round the corner, again dealing with homeless, dealing with addiction.

Eighty-six of those organisations! That needs some level of coordination. And I think that the Scottish Government and the mainstream healthcare system has to be that coordinator or we are going to end up with – I was going to say ‘chaos’, but that is not quite what I mean – we are going to end up with variation in the delivery for different pieces of society and different geographies and that can’t be good. I am really, really pleased that things like the Glasgow City Mission exist – they are really important for a community and they can help us because, the health service can’t do it all, it’s impossible. Somebody estimated that the free care bill that we don’t pay for as billions of pounds, so we require that to exist. My concern is that it sometimes feels a little uncoordinated.

Evans: It seems to me, that with 86 different organisations, each clambering for the same penny, for the same pound – it needs somebody to bring everything together.

Leitch: So that would be the other extreme. So one extreme is let all 86 flowers bloom and do as you please – the other is no, no – we’ll have one thing, we’ll bring them all in, we’ll tell them all how it is and we’ll make them all sign a memorandum of understanding and they’ll do it our way. Neither extreme is correct. The local people understand the local context. They understand the community in which they are working – they should be allowed to do that. But, just letting all the flowers bloom would mean that Govan would get a different service from Springburn and we should avoid that if we possibly can.

So it is a balance and the leadership element from the Scottish Government is that we should understand that context as best we can, we should fund it appropriately, we should fund it fairly, but allow the local contexts to build their own services. So that would be allowing the local community to decide what is it we need in this geography – is it a soup kitchen? is it a chronic pain thing? is it a yoga class? That should be able to be locally adapted with an overall leadership frame from us that says assets are important, quality is important, patient safety is important, long term conditions are important.

Evans: So really, you want to rubberstamp the appropriateness of what is going on but should you be actively involved in, well, for want of a better word, poking your nose in?

Leitch: The Scottish Government and the National Health Service and the – increasingly integrated – social care system should at some level take responsibility, for the vision, the aim, the mission. If we can’t do that in a country of our size, I am not sure what we are for. So that is why we have one system.

But I am very comfortable with allowing the communities – that is giving power away, remember – that is risky – giving power away to the communities to build the services that they require. So let’s take chronic pain – it is an interesting example – not many people need residential chronic pain services in an in-patient setting, some people do, but it is a very small number – so, we nationally, should decide how we are going to do that and that is what we have done recently. We have decided on a national residential chronic pain centre. So that is the national thing, I and others like me can make those kind of decisions.

As that chronic pain is in the community, as the severity of it is variable – much of that will have to be delivered locally – I can’t design each of those local services – that is impossible. So those local services have to be designed by the users, by the clinical staff, by the third sector within those local communities. Now, that is quite difficult – you can’t have board meetings for each of those elements – so you have to find a way of allowing those community assets to grow in a reasonable way, you have to fund them, if you can, appropriately and allow some kind of umbrella organisation like yours or like the Alliance to provide some kind of accountability and governance for that process.

Evans: That is Jason Leitch. The ‘Alliance’ he referred to is the Health and Social Care Alliance Scotland.

Andrew Strong: My name is Andrew Strong, I am Policy and Information Manager at the Health and Social Care Alliance Scotland which is a membership organisation of 15,000 members of third sector organisations working in health and social care, people with long term conditions and disabled people and professional associates working in health and social care – all to a shared vision of helping people with long term conditions, supporting them to achieve their right to live well.

What we have got in Scotland, is a lot of areas of multiple deprivation, where people live under extreme poverty in some circumstances and there is a thing called the inverse care law where the type of health support you get in those areas is disproportionate to the amount of need. I think what we actually need to do, is to start to target some resource into those types of areas.

Our Deep End project, the national Links Worker project is working in seven areas of Glasgow at the moment. That is a dedicated resource in seven GP practices to make those kind of connections into the local community, find out what types of support there are, in areas like Drumchapel, areas like Govan, to really, you know, emphasise the point that people really do need that little bit of extra support to find out what is thriving in their local community and to find out the kind of keys to living in a healthier way.

Lots of people are going to the GP in those types of circumstances and ending up, not getting the types of support that they want, because the GP is very, very busy – it’s not set up at the moment to be that type of support into the local community. But, actually, if you turn that on its head and you think, well, this can be a hub for accessing those types of support, you get a lot better outcome for the money that you put in to it, in my opinion.

And I think that the National Links Worker programme is coming out with some fantastic examples of changing people’s lives as a result. We have had examples of people whose families have died or people who have had suicidal thoughts, who have had a bit of additional support through the Links Worker Programme, through finding things in their local community that are there to help people, particularly with mental health problems.

The Alliance is running an advocacy support programme at the moment in four areas – it is just a pilot project – but the Links Worker Programme is working with that advocacy support project as well to give people a trained advocate in benefits assessments, to actually go to the assessment with them, to explain what the assessment it going to be like. And people want that explanation, that understanding, that better type of approach, that actually understands what they actually need.

Evans: Andrew Strong, Policy and Information Manager at the Health and Social Care Alliance Scotland.

Now, My Skills, My Strength, My Right to Work is a project to reduce inequality, to increase participation and encourage both employers and employees to discuss openly how to create and maintain successful and sustainable employment for a person with a long term condition or an unpaid carer. Louise Coupland is the Employability Development Officer at the Alliance and she has responsibility for this project.

Louise Coupland: I have an example from the past, it was a woman who suffered from MS and working – in employment. The role she was in, was support work – out and about in the community and it wasn’t her job that was causing her any problems, it was the transport she was using – public transport from seeing client A and then back on to public transport to see client B. And she felt that, it was that that was causing her anxiety and stress because bus drivers weren’t waiting until she was fully seated on the bus, it was the stress of travelling.

She managed to contact Access to Work herself and they provided funding for a taxi service to be provided. That is just one example, but a lot of people, when they think of what Access to Work could provide in a workplace, they are thinking about chairs, computers and equipment, but it is a lot more than that – it is about giving people transport, flexibility as well as the equipment and everything else they might need to complete their role successfully.

Evans: From success stories, the other side of that is employers being frightened to employ people with disabilities because they think it is going to cost them an absolute fortune.

Coupland: When we created the campaign, employers that we contacted saw it as a recruitment issue, but it is not – it’s an employment issue – 40% of people in Scotland live with long term conditions. The majority of those will be in the working age bracket so, it is not about recruiting, it is actually supporting the employees you already have, who will possibly in the future, get a condition, or be diagnosed with a condition or several conditions or their home circumstances might change where they become an unpaid carer. And it is not about recruitment – it is actually looking at the workforce that is already out there. You know, in 2020 when we are looking at so many more carers and people with diagnosed conditions – it is going to be a real problem if people aren’t proactive in changing their mindset in what employers should provide.

Evans: So, your job is to sort that out now.

Coupland: We have created a campaign that has got personal stories – it is looking at the person with the condition and their employer and what support they have. The jobs are ranging from third sector organisations to the private sector and we have NHS Ayrshire and Arran on board as well by providing their case studies as well. So it is just to show people how different ways of working, that there is not a tick box sheet – it is about having conversations and being flexible around each other’s need – employee and employer – and supporting that self management and education of colleagues and employers.

Evans: That simple example that you gave of somebody being frightened of using the bus because the bus drivers were pulling off – you know, that seems such an easy thing to solve, just a word in somebody’s ear.

Coupland: Well, that’s it. Access to Work is quite under-used in Scotland and many people don’t understand what Access to Work can offer. I think for small to medium businesses, that they are thinking of a worst case scenario about price tags – obviously it’s the nature of the business that they run – but, it can offer a range of support services – there is the working healthcare service Scotland, which again is a helpline with people at the other end of the phone, who can offer advice. So, there are people who can be signposted to different supports, it is just many employers don’t know they are out there.

Evans: Louise Coupland. For more information on the Health and Social Care Alliance Scotland, their website is alliance-scotland.org.uk. Working Health Services Scotland can be found at healthyworkinglives.com and healthyworkinglives – no gap – treat it as one word, healthyworkinglives.com. And to get details of the Access to Work scheme for England, Wales and Scotland and a separate one in Ireland – the address is too long for me to read out – so just put ‘Access to Work’ into your search engine. All the details of these links can be found on Pain Concern’s website which is painconcern.org.uk.

Now, at the start of this edition of Airing Pain, the Clinical Director of the Healthcare Quality Unit of NHS Scotland, Professor Jason Leitch referred to the so-called ‘Glasgow Effect’, where people living in the poorer, deprived areas of the East End of Glasgow have a life expectancy of at least 15 years less than those living in the affluent leafy areas to the West. So if this, is an example of the link between deprivation and ill health – and not everyone agrees that this is the whole story, that other social factors and environmental issues come into play – then what is the solution?

Leitch: The solution unfortunately, is societal not individual sectors. So the healthcare system can’t fix that – it can contribute to the fix – but it can’t fix it by itself. So, it is multi-factorial: it is about employment; it’s about growth; about bananas in the streets; it’s about green space; it’s about safe schools; it’s about addiction… it’s clearly about healthcare delivery, of course it is – it’s about provision of appropriate healthcare delivery in those communities, not forgetting the middle-class community requires healthcare delivery too.

But, it is also about the broader elements of tackling those inequalities too in a meaningful way in multiple sectors – integrating health and social care. I saw a wonderful example recently in Perth, where they have brought together services inside a school, where there are addiction services, learning disability services, health and social care services and education all in the one campus. That doesn’t fix it instantly but at least the professionals are in the one place, talking to each other. So, there isn’t a quick fix for that – deprivation makes chronic disease worse, but we need to analyse it and work out exactly how we can.

Contributors:

Professor Jason Leitch, Clinical Director of the Healthcare Quality Unit, NHS Scotland
Kieran McGhee
Anne-Marie McGhee
Angela O’Neill
Andrew Strong, Policy and Information Manager, the Health and Social Care Alliance Scotland
Louise Coupland, Health and Employability Manager, the Health and Social Care Alliance Scotland.

More information:

Health and Social Care Alliance Scotland
Healthy Working Lives (NHS support for people with long term conditions and their employers)
Access to Work.

How to break the links between poverty, pain and unemployment

This edition is funded by a grant from the Moffatt Charitable Trust.

In the second programme in our ‘Good Work’ double bill we hear how people in pain and their families are affected by barriers to employment and support.

Staff at the Health and Social Care Alliance set out how the Access to Work programme can help people managing long term conditions to overcome obstacles to getting to and thriving in the workplace. And Jason Leitch of NHS Scotland discusses the Glasgow effect – Scotland’s largest city’s inequalities of health and life expectancy – and how to reduce them.

Contributors:

Professor Jason Leitch, Clinical Director of the Healthcare Quality Unit, NHS Scotland
Kieran McGhee
Anne-Marie Kane McGhee
Angela O’Neill
Andrew Strong, Policy and Information Manager, the Health and Social Care Alliance Scotland
Louise Coupland, Health and Employability Manager, the Health and Social Care Alliance Scotland.

More information:

Health and Social Care Alliance Scotland
Healthy Working Lives (NHS support for people with long term conditions and their employers)
Access to Work.

December 10th is observed across the world as Human Rights Day. It honours the United Nations General Assembly’s adoption and proclamation of the Universal Declaration of Human Rights (EDHR) back when it was first introduced on the 10th December 1948.

This year’s Human Rights Day is devoted to the launch of a year-long campaign for the 50^th anniversary of the two International Covenants on Human Rights: the International Covenant on Economic, Social and Cultural Rights and the International Covenant on Civil and Political Rights, which were adopted by the United Nations General Assembly on 16 December 1966.

The two Covenants, together with the Universal Declaration of Human Rights, form the International Bill of Human Rights, setting out the civil, political, cultural, economic, and social rights that are the birth right of all human beings.

“Our Rights. Our Freedoms. Always.” aims to promote and raise awareness of the two Covenants on their 50th anniversary. The year-long campaign revolves around the theme of rights and freedoms — freedom of speech, freedom of worship, freedom from want, and freedom from fear — which underpin the International Bill of Human Rights are as relevant today as they were when the Covenants were adopted 50 years ago
United Nations Secretary-General Ban Ki-moon

Here at Pain Concern one of our firm beliefs as a charity is that Health and Wellbeing is one our fundamental human rights. Sadly this not the case globally but we do our best here with our staff and volunteers to help everyone dealing with chronic pain empower themselves and their family members; be it with the tools to help or creating a better understanding within the community itself.

Over the last five years we’ve produced multiple podcasts which cover the vast world of Human Rights. Here are our top 8 rated shows in the area!

AP71: Protect our Girls

Over 100,000 women in the UK have been affected by female genital mutilation (FGM) with devastating long-term consequences including persistent pain. Janet Graves hears from FGM survivors and the healthcare professionals treating them about this culturally-embedded practice and how to uproot it.

Listen here

AP69: People Not Patients

Acceptance can be difficult when people in pain are under pressure from those around them to be ‘the person they were before the pain’. GP Frances Cole’s rehabilitation service puts the people – not ‘patients’ – she sees in control of guiding their own treatment with the aim of being the best they can be with the pain. She asks them to focus on what matters most to them and helps them connect to ‘a new world’ where they can learn skills and knowledge from other people who’ve faced the same challenges.

Listen here

AP66: Not a Burden

There are 178,000 young carers in England and Wales doing unpaid work for parents too ill to perform essential household tasks or even look after themselves. Kerris Olsen-Jones, who works to support these children and young people – some as young as five years old – says that they sometimes ‘miss the opportunity to be children’. She and her colleagues help the young people to socialise and make the most of the opportunities available to them.

Listen here

AP55: More Power to You

‘How are you?’ Three little words often dreaded by people in pain. Gareth Parsons explains to Paul Evans why these simple social rituals can be so difficult for people in pain and how social interactions can instead be made empowering. Parsons’ work on participatory action research gets people in pain together to recognise the negative attitudes or oppression experienced in daily life and find ways to help themselves. The real experts on pain are not the clinicians of researchers, but the people who live with it every day, he argues.

Listen here

AP48: Nursing Beyond Drugs

‘Imagine how it feels if you’re in pain and people won’t help you.’ Like other healthcare professionals, nurses can sometimes struggle to understand the perspective of people living with pain. At a training day for student nurses devoted to chronic pain, Gareth Parsons impresses on his audience the importance of believing the patient and delivers some uncomfortable truths based on his research about the frustrations people with pain often have of healthcare professionals: ‘you are the problem!’

Listen here

AP20: The Social Cost of Pain

]Pain has a huge impact not just on individuals but also on society, healthcare systems and the economy. Airing Pain takes a look at how the International Association for the Study of Pain’s Declaration of Montréal and EFIC (the European Federation of International Association for the Study of Pain Chapters) are working to drive pain up the political agenda. We interview experts in healthcare policy and chronic pain treatment as well as patient groups at EFIC’s European Societal Impact of Pain symposium for their views on how the way society and the medical profession respond to pain could be improved.

Listen here

AP18: Growing Older with Pain

The importance of family and carers taking an active role in the management of elderly patient’s pain is highlighted, along with the importance of raising awareness of the best treatments for pain in older people among health professionals. We also hear the inspirational story of Michael and Rosemary Morrison who together have rebuilt their lives around their chronic back pain and the benefits of using computers and computer games to access information and exercise.

Listen here

AP3: Children and Pain

Chronic pain is as widespread in children and young people as in the population as a whole, but is probably even less well understood. Jan Barton and her son Sam, who grew up in constant pain, discuss their struggle to get a proper diagnosis and to find effective treatment, while, Dr Christina Liossi explains how hypnosis can be particularly valuable as an approach to managing pain for children. Dr Amanda Williams describes the psychologist’s role in helping patients manage their pain and Dr Tonya Palermo explains how a psychologist can explain pain to young people.

Listen here

What role do human rights play in your life?

Let us know in the comments!

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__cfduid	1 month	The cookie is used by cdn services like CloudFare to identify individual clients behind a shared IP address and apply security settings on a per-client basis. It does not correspond to any user ID in the web application and does not store any personally identifiable information.
_GRECAPTCHA	5 months 27 days	This cookie is set by Google. In addition to certain standard Google cookies, reCAPTCHA sets a necessary cookie (_GRECAPTCHA) when executed for the purpose of providing its risk analysis.
cookielawinfo-checbox-analytics	11 months	This cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Analytics".
cookielawinfo-checbox-functional	11 months	The cookie is set by GDPR cookie consent to record the user consent for the cookies in the category "Functional".
cookielawinfo-checbox-others	11 months	This cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Other.
cookielawinfo-checkbox-advertisement	1 year	The cookie is set by GDPR cookie consent to record the user consent for the cookies in the category "Advertisement".
cookielawinfo-checkbox-necessary	11 months	This cookie is set by GDPR Cookie Consent plugin. The cookies is used to store the user consent for the cookies in the category "Necessary".
cookielawinfo-checkbox-performance	11 months	This cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Performance".
viewed_cookie_policy	11 months	The cookie is set by the GDPR Cookie Consent plugin and is used to store whether or not user has consented to the use of cookies. It does not store any personal data.

Cookie	Duration	Description
_ga	2 years	This cookie is installed by Google Analytics. The cookie is used to calculate visitor, session, campaign data and keep track of site usage for the site's analytics report. The cookies store information anonymously and assign a randomly generated number to identify unique visitors.
_gid	1 day	This cookie is installed by Google Analytics. The cookie is used to store information of how visitors use a website and helps in creating an analytics report of how the website is doing. The data collected including the number visitors, the source where they have come from, and the pages visted in an anonymous form.
vuid	2 years	This domain of this cookie is owned by Vimeo. This cookie is used by vimeo to collect tracking information. It sets a unique ID to embed videos to the website.

Cookie	Duration	Description
IDE	1 year 24 days	Used by Google DoubleClick and stores information about how the user uses the website and any other advertisement before visiting the website. This is used to present users with ads that are relevant to them according to the user profile.
NID	6 months	This cookie is used to a profile based on user's interest and display personalized ads to the users.
test_cookie	15 minutes	This cookie is set by doubleclick.net. The purpose of the cookie is to determine if the user's browser supports cookies.
VISITOR_INFO1_LIVE	5 months 27 days	This cookie is set by Youtube. Used to track the information of the embedded YouTube videos on a website.

Cookie	Duration	Description
_gat_gtag_UA_32255482_2	1 minute	No description
CONSENT	16 years 8 months 9 days 15 hours 12 minutes	No description
huBv		No description

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