Pain Concern

The James Lind Alliance‘s Priority Setting Partnership have published a new 10-minute survey to investigate the gathering uncertainties about hip and knee replacements for osteoarthritis.

If you have or know someone who has osteoarthritis of the hip or the knee, or you are a healthcare professional, take the survey here. You can learn more about it here. The survey closes on the 27th of September 2013.

The Royal College of Paediatrics and Child Health (RCPCH) has received funding to develop an online training course for doctors and senior healthcare professionals who are responsible for managing Children and Young People’s Pain.

In order to ensure the training course enables doctors to meet the needs of children, young people and their families, they would like to know what competencies, skills, knowledge, attitudes and beliefs you would expect from a doctor or senior health professional managing pain in a baby, child or young person.

They have issued two online surveys in order to find out more about the experiences of patients, parents and carers.

The RCPCH would like you to tell them about your own experience of pain, and the interventions that you have found to be helpful or difficult in relation to your overall care.

https://www.surveymonkey.com/s/pain-management-in-children

They would also like to find out about your experience of caring for a child who has either experienced or is experiencing pain, and the interventions that you found to be helpful or difficult in relation to their overall care. Pleas note that in this survey the term ‘child’ refers to all ages from birth to 24 years.

https://www.surveymonkey.com/s/pain-management-in-CYP-parents-carers

Both surveys take about 10 minutes to complete and the results will help to write the brief for the development of learning content.

Empowering patients from GP’s surgery to pain management programme

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Healthcare professionals and people with pain need to work together to manage chronic pain conditions, but how is this achieved in practice? Paul Evans speaks to a GP, physiotherapist and clinical psychologist to find out more. We begin by hearing from, GP and pain specialist, Neville McMullan about his work with Ulster Hospital to improve access to pain management programmes by bringing them out of the hospital and into the community and giving people the skills to manage their own pain. Dr McMullan stresses the importance of getting patients out of a cycle of inactivity and physical deterioration.

This is where physiotherapy comes in as we hear from Ashley Montgomery, a physiotherapist at Ulster Hospital. Montgomery describes how understanding the reality of chronic pain, being believed and getting the balance between rest and activity right can give people the confidence to take the first steps towards self-managing their condition.

Consultant Clinical Psychologist Jenny Maguire explains how acceptance and commitment therapy (ACT) builds upon CBT (cognitive behavioural therapy) to help people adjust to living with pain as a long-term condition.

Issues covered in this programme include: Physiotherapy, accessibility, community healthcare, activity, exercise, ACT: acceptance and commitment therapy, CBT: cognitive behavioural therapy, psychology, multidisciplinary, pain toolkit, activity-rest cycle, pacing, social life, confidence, flare-up, painkillers and alternative therapy.

Paul Evans: I’m Paul Evans and welcome to Airing Pain, a programme brought to you by Pain Concern, the UK charity providing information and support for those of us living in pain. This edition has funded by the Big Lottery Fund’s ‘Awards for All’ programme in Northern Ireland.

Dr Neville McMullan: We’ve been criticised, whether rightly or wrongly, that ‘My previous GP only did this, and only gave me painkillers and only did X, Y and Z or the dose of the painkiller was increased.’ That’s not necessarily the right way to manage pain appropriately and we need to get the message across to the patient that the way to manage your pain is not always to go up to next dose of painkiller or that stronger painkiller, but it’s really to assess their pain fully and then to educate them that there may well be more than just the pain involved in their experience of the pain.

Ashley Montgomery: A lot of people come and they ask, ‘What is wrong with me? How long is it going to take to get better and what can you do?’ And there’s very few people that actually say to us, ‘What can I do?’

Evans: In this edition of Airing Pain we’re looking at how pain cannot be dealt with in isolation; how pain management professionals can be key to helping us help ourselves. And how a pilot scheme in Belfast could make pain management programmes more accessible. We’ll start at the doctors’ surgery, which is more than likely the starting point for most of us when chronic pain hits. Now a GP with a special interest provides additional services while still working within the community so, for instance, your local health centre may have GPs with special interests in diabetes, epilepsy, headache, cardiology or, if you’re really lucky, pain management.

Dr Neville McMullan is one of just two such GPs in Northern Ireland. He works out of Cherry Valley surgery in Belfast, but also with the pain management team in the Ulster Hospital.

McMullan: I’ve been involved with the Ulster Hospital for the last three to four years. I do a weekly clinic there every Wednesday and I was brought in initially to try and improve the very long review times that a lot of these patients were experiencing. They had their initial consultation and then it could’ve been upwards on three years before they had their review with the pain clinic, and that’s an unacceptable time limit. So, along with myself and the staff over the last three years, within about nine months we had that down to about a 6-month review.

The problem with chronic pain patients is that there’s no cure and I always try and compare it with the diabetes model: there’s no cure for diabetes but we have to try and manage them as best we can. So these patients do need to be reviewed and again, we can argue about what the best setting is to review these patients – they don’t all need to be done in a hospital setting. But you know, your goal for a number – but not all patients, this doesn’t hold true for every single pain patient – would be to give the patient the tools to manage their condition themselves, as best as possible, and can dip in and out of some specialist resources if they need to in the future. But ideally, they would be given the empowerment and the tools to manage their pain rather than just getting more and more cocodamol from their GP.

Evans: What sort of tools would you give them?

McMullan: We actually have a thing called the ‘pain tool kit’ which is a lovely wee handbook that is written in very simple language that they can use. It talks about very basic concepts of pain management, which they can manage themselves whether it’s through pacing and goal-setting and setting themselves realistic achievable targets. It talks about physical activity and how important it is to keep things moving and keep things mobile. It’s the old adage: ‘If you don’t use, you lose’. We would use physiotherapists quite a lot through the Ulster Hospital to encourage patients to break through this chronic pain cycle where they get into this chronic misuse of the limbs or whatever it may be, and the muscles then waste away and they don’t have any support for their spine or whatever the pain may be.

Evans: Dr Neville McMullan, GP with a special interest in pain management. Ashley Montgomery is a physiotherapist at the Ulster Hospital. She works with its pain management programme led by consultant clinical psychologist Jenny McGuire

Jenny McGuire: The pain management programme in the Ulster is an eight-week grid-based programme; it’s three hours every week over eight weeks, and it’s multidisciplinary so I work into it, Ashley works into it from the physiotherapy end of things, and one of the pain consultants works into it as well from the medical end of things. So it’s a multidisciplinary treatment programme based on acceptance and commitment therapy.

Evans: Acceptance and commitment therapy?

McGuire: Acceptance and commitment therapy is one of the newer third wave cognitive therapies so it has sort of built, if you like, on the foundations that were there in traditional CBT, and what we found is that this type of therapy can have better outcomes and work better with long-term conditions.

Evans: Now CBT, cognitive behavioral therapy, these are talking therapies but if we’re in pain, we don’t need to talk about it, we need it fixed.

McGuire: I think in an ideal world if it was that straightforward, that’s exactly what would happen, but I think as you probably know Paul, from your own experience, pain is a very, very complex thing to live with. It’s not just the physical component of pain: pain impacts on you emotionally; it impacts on you psychologically; it impacts on the choices that you make in your life; it impacts on the reality of what you can and can’t do in your life. So pain is not just a physical experience. So, if you consider all of that, then clinical psychology has a lot to bring when you think about living with a chronic condition like pain, like chronic pain.

Evans: But I’ve said this many times over, I’m probably boring people to death with this: when you feel low and as you say incredibly depressed and the pain is doing all these other things, the last thing you want to be told is to see a psychologist because we’re not mad; we’re perfectly normal people but we’re in pain.

McGuire: I think that’s one of the things clinical psychology comes up against in chronic pain: sometimes the assumptions that are there about psychology and as soon as psychology is mentioned, I know we’ve had people in our programmes that have said to us when they’re sitting there in the consulting room and the pain consultant says, ‘Maybe you should think about having a talk with our clinical psychologist.’ The automatic assumption is, ‘Is he trying to say this pain is all in my mind? Do they think I’m making this up?’ It’s almost like their pain experience is invalidated in some way and, actually, that couldn’t be further from the truth of what it is. I think there is a recognition now, and if you look at most of the pain services across the UK, there will be clinical psychology attached to them, that this is a long-term condition that is very, very difficult to live with and it spills out into different types of areas in your life: it impacts on your self-esteem; it impacts on relationships; it impacts, as you’ve said, on your mood, on your functioning. So it makes sense that there would be a clinical psychologist involved in your care as part of a multidisciplinary team.

Evans: Many people as they start their pain journey, they will not be seeing you at the very beginning. In fact, it’s very, very late in the pain journey.

McGuire: That’s something that we are very aware of and it’s something we do talk about as a team. By the time a person gets to a pain clinic – and the gateway to our pain management programme is through the pain clinic so it’s not widely accessible – and by the time people sometimes get to the pain clinic, they maybe try different medications for a while or there’s other investigations to be done before there is a clear diagnosis of chronic pain or a condition with chronic pain and it’s then that the pain management programme is talked about. So it is late in the journey and I think that’s something that comes back to maybe resources and where certain healthcare professionals are being placed in the pathway of care for chronic pain. I certainly think in our team, the nursing staff and the doctors are more and more now having that conversation about self-management and about the pain management programme earlier, even though the referral might not happen until other investigations and things like that are done. But I do think overall it needs to be moved earlier in a person’s experience of pain.

Evans: Ashley, you’re a physiotherapist. Are people sent to see you too late in their pain journey?

Montgomery: I work in a service that is an acute service, so I work in a hospital site: so I would see people very early on in their journey, in other words: people directly from the emergency department, directly from orthopaedics. Then the other side of our service is people who come along with chronic pain conditions and that’s via the pain clinic or through the rheumatology service. So I see two types of patient groups: I see the acute presentations and also I see people who are already on the pain journey, who are already experiencing chronic pain over a long period of time, and they’re very different groups of patients. And my management of that patient and the care of that patient is very different.

Evans: Tell me if I’m wrong, but I suppose the difference being a physiotherapist with somebody with acute pain is that you’re helping them get better, whereas somebody with chronic pain, you’re helping them just manage it?

Montgomery: Yeah, if somebody was to come to me from the emergency department after having sprained their ankle, I’m there to help them to get better. Somebody that comes through the pain service that has been round many services probably by that stage and they’ve been diagnosed with a chronic pain condition, whether it be a rheumatology-based condition or fibromyalgia or chronic low-back pain, it’s a very different management of that condition and the journey for that patient is very different accordingly. And my approach would be very different because it’s not about curing, it’s not that biomedical ‘motto’ where you’re going to make them better, it’s more about helping them to understand their pain and introducing self-management strategies and tools to help them on that journey.

Evans: What sort of self-management strategy tools would you introduce?

Montgomery: I think a lot of people come, hopefully you’ll agree Jenny, and they ask, ‘What is wrong with me? How long is it going to take to get better and what can you do?’ And there’s very few people that actually say to us, ‘What can I do?’ I actually introduce it that way: ‘Well, this is my understanding of your condition, how your presenting, this is what I can do and this is what I think we should proceed with in terms of self-management.’ In self-management, I think there’s different aspects to it – certainly people actually understanding what chronic pain is, understanding that it’s not in their head, that’s a really real experience for them and that their pain is real is very important. I think also, not just that understanding but the fact that somebody can actually understand and believe them that they actually are experiencing pain – that’s very important in terms of them accepting their own condition. Then there’s different aspects in terms of activity: pacing. Physios have got a reputation I suppose in terms of ‘Get people with pain moving; they’ll feel better for it.’ [Laughs] But I come from a more balanced approach in terms of the balance between rest and activity – it’s important with patients that are experiencing chronic pain.

The other thing is, with self-management, it’s not just the understanding, but it’s actually the patient learning to accept where they’re at. It’s not a sign of defeat, it’s not them giving in, ‘Now, OK. I’ve got this condition.’ It’s actually the start of a process that helps them live with their pain. That’s why we follow the ACT principles because, for them to actually commit to that and start to make changes and to make adjustments, that’s the first step. That’s really, really important and whether that be in relation to physical activity or whether that be in relation to emotions or feelings or fears, it encompasses both of those.

Evans: ACT is acceptance and commitment therapy, we’ve talked a little bit about accepting it, but how much of a barrier is that to accept something… .

Montgomery: That you don’t want?

Evans: Or that we think that the doctors are there to make us better, accepting something that is making your life worse?

Montgomery: I think it comes back to what acceptance means and I think sometimes acceptance gets confused with resignation, putting up with, and in ACT acceptance is not that. Acceptance is more around how you make room for this change that has come into your life. You don’t have to like it, you don’t have to want it – if somebody came along with a magic wand and said, ‘We can get rid of this’, you can absolutely say, ‘Yes please, I’ll take it.’ But it is about making room, I suppose, for some experiences in your life that are unwanted and unasked for. Sometimes those are negative things and sometimes they’re positive things and it’s about making room for all of those experiences, whether you see them as positive or whether you see them as negative. And it is very difficult because when you’re in pain, your normal response is to do something to make it stop and if you can’t do that by yourself, you seek medical input. And we’re in a culture, I suppose, where there’s an expectation that the doctors will at some point find something to fix us, to ease it or to make it go away. I think it’s a very hard reality, sometimes, with chronic pain particularly when people sometimes have seen so many different doctors and they’ve tried so many different medications and the pain is still there. Sometimes they’re also living with quite bad side effects from the medication that they’re on.

I think it can be a real crossroads really with chronic pain to get to a point where you realise that the doctor may not, at this moment in time, the doctor may not be able to do anything more. Different people get to that point at different stages and some people may never get to that point – everybody’s journey is different and I suppose where we would work from is with the acceptance end of it. It’s about making room for this thing in your life that you didn’t ask for and you don’t want and it’s having quite a lot of impact on your quality of life – on working life, on finances and all that kind of thing – but how can you make room for it and try and live your life alongside it. So as well as accepting and making room for this condition that has come into your life, it’s also about reconnecting with your values, with those things that are close to your heart. Very often we find with chronic pain, in your effort to try and manage the pain or to try and reduce the pain or try to have some control over the pain, all of a sudden the things that really matter to you in life are the things that start getting cut out: so you don’t see your friends, you become less active, you may be saying no to things that you could do just in case it would be a bad pain day or it might flare things up, so you start actually disconnecting from things that are precious to you. So ACT is about both of those things: it is about making room for something that maybe is difficult to live with, exploring your relationship with your pain, but also reconnecting to those things that actually matter to you, with your values.

Evans: In those conditions, pain is ruling your life, pain is managing your life – it’s moving away from that so your life is managing the pain?

Montgomery: That your life is living with the pain; there will be times where the pain feels more dominant. So if you’re in the middle of a flare-up, the reality of that is you have very minimal choice if you’re in the middle of flare-up pain but if you’re maybe at other points, we talk about ‘wiggle room’. Your wiggle room might increase on other days compared to the amount you might have on flare-up days, so it’s increasing your flexibility and living with the pain so that day-in, day-out, depending on how your pain is, you can still make choices that are in the direction of your values, that are in the direction of what actually really matters to you, rather than it being an ‘either or’ – ‘I either have to do the things that really matter to me or I’m in pain and I can’t.’ It’s not, it’s a ‘both and…’.

Evans: One of the things that must go along with that – you mentioned ‘pacing’. ‘Boom and bust’ is an expression that everybody with chronic pain will have experienced?

McGuire: Yes we often touch on this. We discuss it very openly in the group as well. I very much come from an understanding where people with chronic pain, it literally impacts not just on everyday life in terms of their emotions and the psychology side of it, I suppose, but also physically. In other words, when people withdraw they become less physical in terms of they don’t go out walking, they don’t socialise – even the simplest things like breathing can be affected by their chronic pain. And posture because they’re sitting down more, they’re afraid to move. Things like balance – some people become more dependent on walking aids because as they withdraw, as they become more sedentary, and because their pain has dictated that to them, all the time what’s happening is they’re becoming more de-conditioned.

But some theories would say, ‘Right, get people going, get them moving, get the adrenaline going, get the serotonin released, it’ll make them feel better, it’ll give them confidence, it’ll impact on their pain and that will be well and good’. And that is true to some extent, but a lot of people with chronic pain, particularly by the time they’ve come along to the Pain Management Programme, I think it would be very unprofessional of me to suddenly get people up and moving when they haven’t moved in maybe 5–10 years and they’re still on a zimmer rollator and I’m expecting them to do step-ups. So I introduce very much the basics; I call them my building blocks and we talk about breathing and about improving their breathing pattern, we talk about posture, we talk about balance, we introduce that, we allow them to self-assess that for themselves. It’s not about coming along and doing lots of exercise, but it’s introducing these basic tools or these basic aspects of physical activity first of all, and then hopefully that allows people to get more confidence and get the basics right. There’s no point in me encouraging people to go for a walk if they find that even going up a few steps is difficult because their balance reactions are down. So it’s very much, rather than ‘boom or bust’, it’s very much ‘I’d like to get the basics right’, building that and allow people to gain confidence in their own ability and then introduce other strategies like the benefits of more physical work like going out walking, like going swimming, because that’s where the other aspects of, I suppose whether you call it pain control or the ‘pain gate theory’ come in, and how moving can impact on your pain experience as well as the psychological talking therapies.

Evans: Well that’s easy, that’s absolutely settled now, we all know how to do it. The problem is that when somebody with chronic pain feels well, they want to do it all today. How do you break that barrier?

McGuire: We actually spend quite a long session talking about flare-ups and we talk about the impact of a flare-up. That impact can be very emotional and it can be very physical. We strip it right back and oftentimes people with a flare-up can get warning signs and also triggers, so it’s actually taking it back and allowing people to become more familiar with those warning signs and start to read them and take action, because, like you said, a lot of people with chronic pain think, ‘Oh this is a good day, I have to do this, I have to get the house cleaned or I have to go meet somebody’ and then they suffer for it for another 2 weeks. So it’s actually talking about getting that balance again. It’s actually being more aware of what your body is telling you, but also then putting it into practice so that instead of, yes maybe that day you get a sense of achievement, you feel good for it and maybe someone says to you, ‘Well that’s great, you got that all done.’ But then for two weeks you’re off kilter and you feel miserable and you’re sore and you can’t do anything then. It’s about giving people the tools to recognise that, but also talking them through in terms of those management strategies and that’s in relation to that commitment to actually take onboard what they’re telling themselves. Patients are the experts in this; they recognise very familiar patterns, particularly in groups, they’re very quick at saying, ‘That’s me, I can understand that and I do exactly the same.’ And they actually come up with very good coping mechanisms and coping strategies and give very good examples. And some of them actually challenge each other in terms of, ‘Well, why did you do that? You could do it this way or do it that way’. So that’s not just from a physio head, that’s from a psychological head in terms of being, you know, looking at it and stripping it back and looking at how it impacts you, not just physically but emotionally as well.

Montgomery: I think sometimes it is about very much handing choice back to people that are living with the condition and, as you’re saying, if you have a good day then the pressure’s on to do everything in that good day and then inadvertently you do too much, your pain flares up and you’re out of action for whatever length of time. And sometime it’s about handing that back as a pattern and saying, ‘How much does that way of doing things fit with your values?’ Yes, on that one day you might get all of your ironing done and you get your house cleaned and you get your…whatever tidied out but for the rest of the two weeks you’re too sore to see your friends, you’re too sore to play with your children. So think about how you’re managing and what way of managing fits best with what actually matters to you.

Evans: But you see, one of my strategies – you can tell me whether I’m right or wrong – is that I will do what I want to. I will take the hit just for that afternoon climbing a mountain, or something like that.

Montgomery: And is that something that’s close to you heart, that getting out and climbing the mountain and actually going, ‘Yes I’ve done that. I know I’ll pay for it but it’s something that’s really precious to me.’ Is that a strong value?

Evans: Yes, it is.

Montgomery: And that’s, again that’s some of the choices that you make and we’ve had examples in our group where people will sometimes do things – maybe it’s an activity, maybe it’s something with children – where they know they are going to be very, very sore after it but they will do it because the value and the importance of that in their life overrides what the pain is telling them about the negative consequences of doing it. And it’s really important to hold on to stuff like that because the pain will still be there. What you’ve just talked about there, that’s the stuff that makes life worth living.

Evans: How much pain does one need to be in to come to a pain management programme?

Montgomery: We don’t put a level on it. As far as we’re concerned, your pain is whatever you tell us it is so we very much come from, as Ashley said, you are the expert in your pain. We might have ways of thinking about your relationship with pain or provide a space in the programme to maybe critically evaluate and reflect on that a bit, and we certainly have hints and tips around what you can do to get going again, but you’re the expert in your own pain so you take the parts that fit for you, that have meaning for you. It’s not prescriptive; it’s very much led by people’s own pain knowledge and pain experience.

McGuire: Yeah, and it’s not about the level of pain or the frequency of pain, it’s more how that person is feeling the impact of that pain on their life, so it’s not just that unpleasant physical experience, but it’s that unpleasant emotional experience they’re having alongside that. And when that’s starting to impact on their everyday life that’s when we feel the pain management programme can be beneficial for the patient, so it’s not about how severe it is or how frequent it is, it’s more the impact that pain is having on that person’s day-to-day life.

Evans: Physiotherapist Ashley Montgomery and consultant clinical psychologist Jenny McGuire at the Ulster Hospital. I’ll just remind you that whilst we in Pain Concern believe the information and opinions on Airing Pain are accurate and sound, based on the best judgments available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf. Don’t forget that you can still download all the previous editions of Airing Pain or obtain CD copies direct from Pain Concern. If you’d like to put a question to Pain Concern’s panel of experts or just make a comment about these programmes then please do so via our blog, message board, email, Facebook, Twitter or pen and paper. All the contact details are at our website which is painconcern.org.uk.

Now, back to what I said earlier about GPs with special interests able to work within the community. Dr Neville McMullan with his special interest in pain management and links with the Ulster Hospital pain team has his own view on bringing pain management services closer to the people who need them.

McMullan: Of the patients I would see regularly in the hospital setting, and certainly the review clinics, they could be managed equally well in a community setting and with multidisciplinary input, which would probably appeal more to the patient rather than having to trek up and find parking at the hospital and the hassle of getting an appointment and so on. So if we could do it in a more local and neutral setting, a neutral venue with appropriate people seeing the patients, then my feeling would be this would be the right way to go.

Evans: What are you talking about? Church halls? Leisure centres? Sport centres?

McMullan: I’d have no problems with any of those! Neutral territory means it doesn’t have to be in a healthcare setting. We are certainly keen to push the physical activity side of things for health prevention in lots of other disease areas: where there’s cardiovascular or diabetes or obesity, so certainly a leisure centre would be an ideal setting to run clinics from. Why not?

Evans: How is that progressing?

McMullan: There are pain management programmes in place within the Ulster Hospital. There are some pilots that GPs are now able to refer into which are hopefully going to develop into more permanent programmes, but we’ll have to wait and see on that. There are other pain management programmes running in the Belfast Trust as well and they are multidisciplinary in nature too, but they are currently in a hospital setting and not in the community. So there’s work to be done; there’s definitely scope for those clinics to be built upon or developed. One of my other big, burning issues is to get nearly a public health campaign going about educating – certainly in the musculoskeletal field – of the need for patients to be physically active. We touched upon that earlier, that they need to be engaging in a form of activity to keep their muscles and joints working. But there’s a real need to educate healthcare professionals. I think one of the worst things that can happen to any patient is to go along to their GP and their pain isn’t taken seriously. I was at a meeting recently with some patients with endometriosis and one of the biggest problems with seeing their GP was that they felt they weren’t being believed. And I think that’s very important that the patient’s word is taken as this is their pain and this is how the pain affects them. I think if they can be listened to and believed and then we can come to some sort of way to manage their pain better, then patients will get a lot more out of that rather than being dismissed with a stronger or an alternative painkiller.

Contributors:

Dr Neville McMullan, GP, Belfast
Ashley Montgomery, Physiotherapist, Ulster Hospital
Jenny Maguire, Consultant Clinical Psychologist.

Empowering patients from GP’s surgery to Pain Management Programme

This programme was funded by the Big Lottery Fund’s Awards For All programme in Northern Ireland.

We begin by hearing from GP and pain specialist Neville McMullan about his work with Ulster Hospital to improve access to pain management programmes by bringing them out of the hospital into the community and giving people the skills to manage their own pain.

Dr McMullan stresses the importance of getting patients out of a cycle of inactivity and physical deterioration. This is where physiotherapy comes in as we hear from Ashley Montgomery, a physiotherapist at Ulster Hospital. Montgomery describes how understanding the reality of chronic pain, being believed and getting the balance between rest and activity right can give people confidence to take the first steps towards self-managing their condition.

Contributors:

Dr Neville McMullan, GP, Belfast
Ashley Montgomery, Physiotherapist, Ulster Hospital
Jenny Maguire, Consultant Clinical Psychologist.

Pain experienced by the very young and very old, and the similar issues arising when dealing with these very different types of patient

To listen to this programme, please click here.

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This edition has been funded by the Big Lottery Fund’s ‘Awards for All’ programme in Northern Ireland.

In this edition of Airing Pain, Paul Evans speaks to experts from Belfast and London about the similarities, differences and challenges in treating pain in infants and the elderly.

Maria Fitzgerald, Professor of Developmental Neurobiology at University College London, mentions the outdated theory that babies do not experience pain and how this misconception has been disproved. She raises the issue of communication, perhaps the biggest problem with babies and the elderly (particularly those with dementia) – if they cannot communicate about their pain effectively, their pain often cannot be adequately addressed. She also discusses the scientific research she and her team are carrying out as well as the importance of treating pain at an early age.

Paul speaks to Dr Pamela Bell, Chair of the Pain Alliance of Northern Ireland and former Lead Clinician for Pain Services at the Belfast Trust. She discusses how pain treatments work for infants and the consequences of not managing pain during the early stages of their development.

Peter Passmore, Professor of Aging and Geriatric Medicine at Queen’s University Belfast, talks to us about the large number of dementia patients who are thought to live with pain and the need for medical staff and carers to be able to recognise changes in patients’ behaviour and therefore become more able to address their pain.

Issues covered in this programme include: Elderly people, children and young people, infants, communicating pain, nervous system development, in utero, during gestation, premature babies, EEG, non-invasive procedures, brain activity, pain history, pyloric stenosis, keyhole surgery, dementia, memory, nursing homes, surgery and observing behaviour.

Paul Evans: Hello, I’m Paul Evans and welcome to Airing Pain, a programme brought to you by Pain Concern, the UK charity providing information and support for those of us living with pain. This edition has been funded by the Big Lottery Fund’s ‘Awards for All’ programme in Northern Ireland.

Maria Fitzgerald: It is estimated that some preterm infants will have 20-25 such procedures a day in their period of intensive care.

Peter Passmore: The people who seem to do badly as far as pain is concerned are the very elderly, so over 85: it would be men, racial minorities and those with memory problems.

Evans: From cradle to grave: the extremes of life when, for some of us, we will be or have been at our most vulnerable. How is pain assessed and managed in those two groups and what common issues do they share for the healthcare professionals?

Dr Pamela Bell is Chair of the Pain Alliance of Northern Ireland and a former Lead Clinician for Pain Services at the Belfast Health and Social Care Trust. She’s an anaesthetist and some years ago she, and some of her colleagues, set up a Masters course at Queen’s University Belfast in the science and practice of pain for healthcare professionals. One of the modules they teach covers pain for those vulnerable groups at the extremes of life.

Pamela Bell: When one tries to assess pain for most people, it’s a question of asking some questions and receiving answers. For those who are very young and preverbal, the neonate and the infant and very young children, that is not a very reasonable way to proceed. Similarly, those who have dementia may not be in a position to communicate their pain in the way that is easily assessed using commonly used pain tools, and as such we felt that there was perhaps a discrimination against those at the end or the beginning of life, in that their pain was not being addressed in the way that it would be were they able to communicate their pain in the usual way.

Evans: So basically, I as a middle-aged man, and for the last fifty-odd years, I have been able to tell you about my pain. Before that, I would’ve had problems?

Bell: Before that you would’ve had a lot of problems, and in fact there was a belief that, for example, newborn infants did not suffer pain in the way that we do. Infants of course cry: crying per se is not necessarily an indication of pain – it could be hunger, or being too hot or too cold. So, healthcare professionals and doctors must take some responsibility for this and anaesthetists, I might add, were often very reluctant to use painkillers, particularly strong painkillers when infants had surgery.

This was really a state of affairs that existed even as late as the 1970s to 1980s and, in fact, one of the things I read to my students when they first come on the course is a little paragraph from an American book, in fact, where a mother writes about her experience of having an infant who needed to have heart surgery and speaking to the anaesthetist afterwards about his distress and why he hadn’t had more pain relief. And the anaesthetist said ‘Well, I don’t really think that children this young have much by way of pain, therefore they don’t get much by way of pain relief.’

We now know from research that this is far from the truth, and that the consequences of pain in very young infants can be more than for similar operations in older children because the neonates have a very immature nervous system and respond more dramatically to pain than older children and adults will.

Evans: Pamela Bell. Now, I want to return to that discredited thought that babies do not experience pain. Neuroscientist Maria Fitzgerald is Professor of Developmental Neurobiology at University College London. Her main research interest is in how the central nervous system develops in infants and children.

Fitzgerald: It was considered that since we have no overt memory or recall of events that take place when we’re young, and among that we do not recall any tissue-damaging or noxious or painful stimulation, that really meant that it wasn’t a concern that if a baby did experience pain they certainly didn’t remember it so that maybe didn’t matter very much. But the early 1980s brought a series of really pioneering studies carried out by scientists, mainly in Canada, actually, but also in the UK and elsewhere, that showed that there were a range of behaviours in very, very young infants that were specific to what we would describe as a ‘painful stimulus’, and it became clear that really even premature infants, and by that I mean infants at the earliest viable age: is I suppose 24-25 weeks gestation, so from that age onwards infants were clearly able to show a set of behaviours which were special to a painful stimulus.

And that really changed the whole climate if you like, the recognition that this could not be ignored and because we don’t remember something doesn’t mean that it isn’t important that it’s taking place. Importantly also, it could be that those painful events may be altering the normal development of the nervous system and that’s a very important aspect of thinking about this.

Evans: So, talking about premature babies, it’s in that period in the special care units that they get poked and prodded, tubes pushed down them, needles, blood tests, a lot is happening?

Fitzgerald: Exactly, and in fact a number of papers have very carefully monitored the number of interventions that these tiny premature infants get. If you simply ask medical staff ‘Which of those interventions do you consider painful? Would you feel pain if it was carried out on yourself?’ It is estimated that some preterm infants will have 20-25 such procedures a day in their period of intensive care. Now I want to emphasise, I’m sure everyone will realise this isn’t being done callously or deliberately in any way. This is as the result of the clinical care that the babies require in order to stay alive and certainly to develop normally.

The difficulty is, we don’t understand enough about this pain and we also don’t understand enough about how to alleviate it, how to treat it in a way that is safe for a very young baby. So for instance, filling the baby up with morphine may not be a good idea, it may affect their respiration, it may affect other aspects of their physiology so it’s a question of the medical and scientific community facing up to this, learning how to measure it, and thinking of good ways to try and alleviate the pain.

Evans: So what research do you do and what does it show?

Fitzgerald: OK, so there are two strands to my research. In the laboratory we use animal models of infant pain and also we look at individual neurons and circuits and we study the development of the pain circuits, but we also have a whole branch of research where we collaborate with neonatologists and we try and measure in these preterm infants, what it is that’s actually going on in their brain when they are undergoing what we would consider ‘painful procedures’ and these procedures have to be done, they’re done for clinical reasons and we would never ever stimulate a baby just experimentally.

So we tap in to the existing clinical procedures and we measure activity in the brain and we measure it in two ways: one is by using a technique called ‘EEG’ or electroencephalography which many people would have come across already where electrodes are put on the scalp, they don’t hurt, they’re not invasive, they’re just placed on the scalp and the activity that’s going on in the brain underlying the scalp can be monitored – that’s one method. And the other method is the ‘hemodynamic method’ where infrared optodes are placed, again, just on the scalp, they’re not invasive in any way, and they measure the blood flow and the oxygenation of blood under the optodes, but that’s the blood in the brain that they’re measuring. So these are two techniques that can be used at the cot side on the ward and they can directly measure brain activity.

So I mentioned earlier that a lot of work has been done on the behaviour of these babies but this is a more direct measure of what activity is going on in the brain as a response to, let’s say, for example, a needle puncturing the skin or a lance, such as the kind of lance that diabetics have to use, is a procedure that is often used on very young babies because they need to have blood samples taken really often and their blood gases measured. So this is a routine, painful procedure that we can tap into, if you like, and see what kind of activity is occurring in the brain.

And we’ve been able to show that even the very youngest infant shows a very strong activity in the neurons in their brain, very immature brains, but very strong activity to every noxious stimulus, but the pattern of that activity changes as they grow up, which is not surprising, so the research that we do is to try and unravel those changes to understand them better and, hopefully perhaps, to be able to use those as a way to monitor their pain and investigate methods of alleviating that pain.

Evans: I can’t remember having blood tests taken from me when I was a baby, we can’t remember it, but is it being imprinted in the brain that will affect us later?

Fitzgerald: That’s a very good question. Neuroscientists think of memory in two ways: there’s the memory that is normally used in general conversation, and actually what that means is ‘active recall’ that you can actively recall an event, but you’re quite right: there’s another type of memory which you call ‘imprinting’ which is a good way of thinking about it, which is that changes have been made in the nervous system which do not involve active recall but which will lead to altered patterns of activity in future life.

In animal models, because we don’t know it happens in man, but in animal models a small noxious stimulation in the early part of life does have an imprinting effect on the nervous system such that if when the animal grows up and has the same stimulus again, it reacts in a more exaggerated way than the animal that’s never had it before so it’s as if a ‘pain history’, if you like, from a critical stage of development stays with you in the nervous system. So that is a form of memory even if you can’t recall it: it has changed you and it stays with you.

Evans: But are you saying that what happens at that early stage in life can affect things like neuropathic pain?

Fitzgerald: This we don’t know and I think it’s a very interesting question. Is it possible that your developmental history, ‘pain history’ if you like, might actually influence your propensity to develop chronic pain? And that is a big research question that we simply don’t know the answer to, so I wouldn’t like to speculate on that but it’s a reasonable hypothesis. It wouldn’t be the only factor: there’d be genetic factors and many other factors, but it’s possible that your early life pain experience does make you possibly more or less vulnerable to the onset of chronic pain, but there isn’t strong evidence either way.

Evans: That’s Maria Fitzgerald, Professor of Developmental Neurobiology at University College London.

Now 56 years ago I had an operation for a condition called pyloric stenosis. Today it’s done by keyhole surgery but the scar down my abdomen is evidence of a procedure that was considerably more invasive. So how would the doctors have judged my pain? Anaesthetist Pamela Bell.

Bell: I think they would have listened to your crying and I think your parents would have noted how your behaviour changed, for example some children who have just had surgery on their tummies don’t move because it’s just too painful and so therefore they lie very still.

And if your mum and dad were used to you kicking your arms and legs they would notice a difference and, in fact, some of these changes which weren’t always interpreted as pain made their way into the form of assessment of pain in infants and children, so while there are many, many different pain assessment tools out there, those that are used after surgery look at things such as crying, such as facial expressions, such as screwing up the eyes, or the shape of the mouth, the general movement of the body: whether the legs are kicking or not, and these are scored by the healthcare professionals – the nurses, usually – looking after the infant and, as a result, a determination is made of the likely level of pain that that child is experiencing and the best of these scales have been rigorously tested in a number of institutions, and show that when pain relief is then given, the score falls.

In other words, the behaviours, the crying, the grimacing alter in the direction of a lower score. So we think that many of these scores have been well validated, so now if it were to happen that you had an infant undergoing similar surgery you would work with the nurses to assess that pain.

Evans: Because most mothers and fathers can recognise the different cries of their baby as feeding, tiredness, wet nappy, pain and so should work with the anaesthetists.

Bell: Oh absolutely, absolutely. And the more experienced the parent, the easier that will be. [Laughs] I know that first-time mums often find it difficult to know what’s happening in terms of the cry at first and it is a learning process, so as they observe their infants they learn for themselves to distinguish the type of cry that is likely to indicate pain in their infant.

Evans: Can young children like that develop chronic pain conditions?

Bell: What has been shown by some studies, for example of circumcision in infancy, is that if pain is not well managed at the time of operation, in later life the child can go on to experience more pain, with a given procedure, than they would have, had their pain been well managed at the time. And there are other studies looking at vaccination pain and so on and so forth. So there is some evidence out there that failing to care for pain in young infants has a long-term impact.

Evans: Anaesthetist, Dr Pamela Bell. I’ll just remind you that whilst we in Pain Concern believe the information and opinions on Airing Pain are accurate and sound, based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf.

Now this edition of Airing Pain is looking at pain management of those at the extremes of life. Moving from those at the start of life’s journey to those approaching the end, similar issues are faced by those trying to assess and therefore manage a patient’s pain. Professor Peter Passmore is professor of aging and geriatric medicine at Queen’s University Belfast. His main clinical and research interest is dementia.

Passmore: It’s fascinating to hear how Pamela deals with those very, very young children. There are difficulties eliciting from them, whether they’re in pain or not, how bad it is or what might be going on and you put it in [the] context of somebody that I see, particularly with dementia where if they seem to be not right shall we say, for whatever reason, one of the causes for that can be pain and I think it’s very important to be aware of that and to detect it and try and deal with it if you think that’s what the problem is. The issues around management in children and in very old people are slightly similar because when it comes to management, you like to be able to refer to an evidence base and for older people, in general, for many treatments we don’t have a decent evidence base with good clinical trials; that’s particularly the case for pain. And the same can be said for the pain and dementia issue.

Evans: I suppose a major part of that are for people in nursing homes with dementia and the staff looking after them?

Passmore: Aye, that’s absolutely right. I mean, I think it’s about having an awareness that pain could be a problem. It involves a number of people, and you’re absolutely right, it does depend on the location that older people find themselves, so it applies to people at home, and again if they have cognitive impairment or memory difficulties or dementia, it might be the carer that you’re relying on that knows them and who one would look to to get an indication of what might be going on. But equally well, there are large, large, large numbers of older people now in the independent sector in nursing homes and many of them have dementia, but many haven’t been diagnosed with dementia and we know for a fact that the statistics would seem to indicate that perhaps in those people, two-fifths to a half might be in pain at any one time and about two-fifths are on any form of treatment.

So from a medical perspective we can treat the situation if it’s brought to our attention and this is where you’ve mentioned the staff in the nursing homes; to have them educated and up-skilled in some way about this awareness thing and also maybe how to assess pain a little so they can bring it to medical attention in case medication is required, but also it could be if it’s not medication, it may be that the physiotherapist might be important or the occupational therapist, so it’s a multi-disciplinary approach and it doesn’t always mean drugs; it often does mean medication, but it doesn’t always mean that. But the key thing at the outset would be that there’s this awareness detection thing needs to be there, and I think the problem is that’s very variable.

Evans: If I were looking after one of my parents, I’ve known my parents for 56 years, I would recognise different things from them, as Pamela was saying with babies, they would recognise different noises, different movements, things like this, that and the other. My father was in a care home and he’d been looked after by various people coming in who don’t know the real person.

Passmore: You’re absolutely right when you say it’s about knowing people. I think if you take the person with dementia for example, and the pain assessment guidelines that are there, what is key is that we should look at the patient first and attempt to illicit from them whether they’re in pain or not, and certainly with people with even more advanced dementia can often indicate whether that is or isn’t likely to be the case but if you’re not able to get this, if communication is a problem, then you’re moving to a more observation sort of mode and you’re absolutely right when you say it’s the change in the person that’s key. It’s the change in some sort of behaviour, some of which are easier to think they’d be associated with pain, perhaps the fidgeting, or people being noisy or shouting. But equally well, people can go from loud to quiet and this can be a feature of old people.

There can be atypical responses to pain and I think this is where the knowing of the individual is probably fairly critical and I think, for example, in the home situation and the carers are there, it would be foolish to ignore if a carer comes along and says, ‘I think they’re in pain’ and it is often the case that the pain doesn’t suddenly arise; these are chronic painful conditions so we know probably in quite a percentage of people that there is a pain-causing condition there in the background. Therefore, if there is a change I think what one normally looks at, what is the list of complaints here or what are the medical complaints and if there’s a pain-causing condition it seems a bit daft to ignore what’s staring you in the face, really.

Evans: Is it all too easy to put somebody down as a ‘grumpy old man’? They put me down as a grumpy irascible old man when in actual fact I’m a mild-mannered man who was turned grumpy, but they can’t see that?

Passmore: [Laughs] I think that’s right. It comes back to knowing about the patient. I think the efforts aimed at trying to deal with say, people who have behaviour abnormalities or people that are behaving irrationally, for want of a better word, that’s also where it comes to knowing about the patient so you’d like to think if you were somewhere, people might have some sort of a dossier about you: what are your likes/dislikes; what were you like, and then if it comes over clearly that here is someone who has been mild-mannered all the way along and then there is an overt change. Again, that should set you to thinking. It’s interesting – the people who seem, from an American study a few years ago, to do badly as far as pain is concerned is the very elderly, so over 85 – it would be men, as you mentioned about being a grumpy old man, racial minorities and those with memory problems. I think you ought to be in a situation where you are looking out for those as the odds seemed to be stacked against people to start with.

You may well be a grumpy old man but the number of times people say to you, ‘Look, I’m in pain again but sure you know, it goes with the territory. It’s part and parcel of where I’m at age wise and what should I expect.’ Chronic pain – that’s often what we’re talking about, which will flare up but chronic pain in the background, in the older people there’s such an influence on things like mood, things like sleep, things like wanting to get up and walk around and do the things you normally do or be able to get yourself dressed and that sort of thing. The actual pain itself has an impact way beyond, so in terms of when you’re trying to deal with it, in dealing with the pain you’re also hoping to have an impact (and some studies have shown this) on peoples sleep, peoples function, peoples mood and you can see when you’ve had an effective pain approach. When it works, it does make a huge difference – people right across those facets, not just easing the pain but it’s also the sequely of that pain. I think it’s much more profound in older people than in younger people.

Evans: You’ve been heavily involved in educating nursing home staff in how to recognise pain in people. What’re your conclusions there? What can you tell?

Passmore: They do seem very keen to want to learn. If you run a study day for nursing home staff, if you’ve got so many spaces, you’ll probably have to turn people away and I think they really, really, really appreciate that and let’s face it, they have their continual professional development to do as well as the rest of it. I’m just not sure how well it’s normally catered for, so you welcome their enthusiasm. They are busy people so it’s maybe working with them to try for them and come up with some sort of solution in terms of a more valid way of assessing people for pain and one that can be done fairly quick and fairly practical. You know, it’s not detracting from their working day because they’re very, very, very busy people as we know, so I think it needs to be some sort of scale that is quick and easy to apply and that does have some meaning and then if it flags up some possibility of pain, further assessment would happen.

If one intervenes, it would be nice to go back and look at the same thing and see that it’s improved. You know, you may get a subjective view – the patients not doing this or not doing that, or they’re sleeping better so we think we’ve done it – if there is a pain assessment situation there and it’s possible to re-do it or re-apply it after you’ve gone with any intervention then I think that’s good. So I think those are the general messages to try and get over and point out of course that, they are dealing a lot with dementia and these people don’t have the communication so it’s vey important to treat them in a special way to try and get the information from them. Those would be the sort of areas or principles you would try to get across.

Evans: Peter Passmore, professor of aging and geriatric medicine at Queen’s University Belfast.

Don’t forget that you can download all the previous editions of Airing Pain or obtain CD copies direct from Pain Concern. If you’d like to put a question to Pain Concern’s panel of experts or just make a comment about these programmes, then please do so via our blog, message board, e-mail, Facebook, Twitter or pen and paper. All the contact details are at our website which is www.painconcern.org.uk.

To end this edition of Airing Pain, I asked anaesthetist Dr Pamela Bell for her advice to a parent whose child has had or is facing the prospect of surgery.

Bell: Talk to the doctors and nurses who are going to be looking after the child. Ask them what tools they use to assess pain and ask how you can help in the process of monitoring your child after surgery and helping to highlight how you feel your child’s pain is. You will have noticed with your infant that their behaviour changes when they are in pain and if you can reflect that to the healthcare professionals looking after the child, then you will be well on your way to ensuring that the pain is well assessed and therefore well treated.

Evans: And advice to a health professional: listen to Mum and Dad?

Bell: Absolutely. Absolutely. They will have monitored their child’s behaviour over time and since you can’t ask the infant how their pain score is, utilise the parent’s experience as part of your assessment tool when you’re dealing with this child after surgery.

Contributors:

Maria Fitzgerald, Professor of Developmental Neurobiology at University College London
Dr Pamela Bell, Chair of the Pain Alliance of Northern Ireland and former Lead Clinician for Pain Services at the Belfast Trust
Peter Passmore, Professor of Aging and Geriatric Medicine at Queen’s University Belfast.

Pain experienced by the very young and very old and the similar issues arising when dealing with these very different types of patient

This edition has been funded by the Big Lottery Fund’s Awards for All Programme in Northern Ireland.

In this edition of Airing Pain, Paul Evans speaks to experts from Belfast and London about the similarities, differences and challenges in treating pain in infants and the elderly.

Peter Passmore, Professor of Aging and Geriatric Medicine at Queen’s University Belfast, talks to us about the large number of dementia patients who are thought to live with pain and the need for medical staff and carers to be able to recognise changes in the patients’ behaviour and therefore become more able to address their pain.

Contributors:

Maria Fitzgerald, Professor of Developmental Neurobiology at University College London
Dr Pamela Bell, Chair of the Pain Alliance of Northern Ireland and former Lead Clinician for Pain Services at the Belfast Trust
Peter Passmore, Professor of Aging and Geriatric Medicine at Queen’s University, Belfast.

Pain experts from across the European Union met in Brussels in May for a meeting of the Societal Impact of Pain. The group is a lobbying platform which aims to improve pain management across the EU. This year’s meeting focused on two topics: how best to measure the quality of pain management services and helping people with chronic pain remain in or re-enter the workplace.

This video features brief interviews with some of the most influential people at the meeting talking about the reasons for holding it and their aspirations for the future of pain managment in the EU.

Airing Pain is ‘an excellent resource that gives good information and support’ and ‘makes you feel part of the pain community’, according to feedback from listeners. These comments were recorded in a recent evaluation of Pain Concern’s radio show to assess how far Airing Pain has been successful at reaching out to and helping people with pain.

Airing Pain first aired in September 2010 with the aim of taking support into the homes of people living with pain and over forty 30-minute episodes have now been broadcast. The broadcasts bring together people with pain and top specialists to talk about the resources that can help. All programmes are available for download from painconcern.org.uk and iTunes. New programmes are broadcast via Able Radio.

The evaluation found that on average just under 350 people have listened to each of the first thirty-six programmes and that each edition is downloaded on average 35 times a month. The most popular programmes include ‘Power over Mind and Body’, which looked at the importance of combining psychological and physiological approaches to pain, as well as programmes on ‘Effective Communication’ and ‘Growing Older with Pain’. Older programmes are still attracting a steady stream of listeners, suggesting that their content continues to be useful long after the time of broadcast.

The team also invited listeners to participate in a survey designed to capture information on the age and location of listeners as well as their responses to the show both positive and negative. One hundred and twenty people responded allowing us to discover, for example, that the majority of listeners (87 per cent) live in England or Scotland and that 83 per cent are aged forty or older.

Listeners were asked what they liked about Airing Pain with many appreciating that the programmes, in the words of one respondent, ‘highlight the issues that concern people with chronic pain’. Airing Pain was also praised for its high production standards, for being ‘interesting and lively’, for featuring the voices of a broad range of healthcare experts and people living with pain and for giving tips on self-management. Many listeners found that the programmes helped them to feel part of a broader ‘pain community’; a particularly important result as pain can often lead to people feeling isolated and misunderstood.

The evaluation has also provided the Airing Pain team with information about areas where there is room for improvement. The old website came in for some criticism from respondents to the survey and with this in mind the developers of the new website worked to provide easier access to the programmes. Perhaps the most important suggestion came from the researchers, who urged Pain Concern to improve awareness of the show to ensure that more listeners can benefit from this resource in the future. The listening figures from the latest programmes released after the study’s completion suggest that progress has been made as programmes 37 to 42 have already had between 1800 and 3500 listeners each.

Tom Ellis developed chronic pain after falling on ice. His father Richard describes how the family pulled together to get through their ‘year from hell’

At the start of 2012 the nation was full of optimism, anticipation and great expectation for the forthcoming year: a year that would allow us to witness the greatest sporting spectacular live on our very own doorstep; a royal celebration that would lift our spirits from the economic gloom and a summer of record breaking heat (again!). For my Team Ellis (GBR) it was the start of the Year from Hell: a year of unknowns, questioning and soul searching.

In March my son fell on the ice on his way to school. Reaching out to steady his fall he injured his right wrist, which he had broken the previous year. He was taken to Leeds General Infirmary and he spent the next fortnight with his wrist in plaster.

Towards the end of the fortnight Tom began to complain about shooting pains in his wrist and tingling sensations he had not felt before. He also expressed concern regarding his fingers which had become rigid and unable to grasp. At a review meeting with the consultant it was decided that the cast was too tight and a new one was applied. The next day Tom’s school contacted us to advise that his right wrist had developed a claw like distortion for no reason. We immediately raced down to the casualty department to search for urgent medical treatment and comfort for our frightened young son. Throughout this time various tests were conducted: was the new cast too tight? Was he calcium deficient? The questions, unlike the answers, were endless.

Frightened and bewildered, it was at this time that we were introduced to a new acquaintance of Tom’s: one who was most unwelcome; one who would be at his side and plague our family for some time to come. This acquaintance was called Chronic Pain Syndrome.

The initial tests showed no results and he was admitted to a general ward. During this time Tom had several complete body spasm attacks of agonising pain. Grasping hold of the bed with his left hand he would scream out whilst his new acquaintance introduced himself. We as parents looked on helplessly, reaching out for support from the medical staff who were also in a state of confusion.

When the spasm attacks faded Tom would sleep and we would look in at our son, who earlier had shouted “Why can’t you make this stop, Daddy?!” as loud as he could. We as parents felt helpless and unsupportive to our son in his hour of need. What was causing this unprecedented pain in our boy? Why were the doctors not racing to his bedside with a “golden pill” for him to take? Would he wake from his sleep and this nightmare for us all be over? The answer would be “No”. Tom would wake from his silence only to announce that he could feel another attack looming.

Once again we were forced to watch on from the sidelines as Tom battled for peace and normality. After several days in hospital we were summoned to meet with the consultant in charge of Tom’s case. This was it! A solution had been found; our prayers had been answered. No more watching my little pal screaming whilst shrouded in agonising pain. My wife and I sat in the consultant’s office and we eagerly awaited the news that the results had come back and we were homeward bound!

The news that we were greeted with turned our world upside down in an instant …. “There is nothing we can do for Tom in the short term”….. “He has Chronic Pain Syndrome with distortion”….. “The medication we will prescribe will be trial and error and will not work for at least 3 months”…. “There is no medication that will stop his attacks other than our prescribed treatment…. Nothing”. Even though I tried at no stage did I hear him say that we would be going home to a takeaway and a night in front of the T.V!

Tom eventually was discharged as little else could be done for him in hospital and it was then that we began our journey of managing Tom’s condition as a family.

His attacks would come at any time of day, wherever we were. His new acquaintance was not afraid to wake him through the night as school was now not an option for Tom. The attacks were just as regular, lasted longer and were accompanied with involuntary arm and leg movements. Tom’s sisters would often witness him writhing around in pain in the lounge or, in one instance, a car park floor. Trips to the rugby match would be cut short as he was “going to have a do!” Ambulances were called on several occasions (and often refused to come) and we’d be greeted at the A&E with the question “Chronic Pain Syndrome??”

One of the most poignant instances was when Tom was celebrating his birthday, obviously a key date for Tom. This was a big day for him; a new start, new clothes, new outlook… only to be rushed down to A&E with a new spasm attack.

During this time I also lost my job and my father-in-law was left paralysed as the result of a stroke. Our precious world as we had known it was beginning to crumble but this was a time when the family needed more support than ever. Days were spent managing Tom’s condition, supporting my father-in-law (who was in a separate hospital), looking for work and ensuring that our two daughters maintained some form of routine. It was chaotic and spiritually draining. The royal celebrations and Olympic Games were lost for us in a sea of confusion, self-analysis (why us?) and suffering. Sadly my father-in-law later passed away.

It was key to remain positive throughout the dark times and to adhere to prescribed medication. During our dark days spirits were low and many a tear was shed, but we were Team Ellis (GBR)! We had to remain strong.

We used a number of techniques and strategies to remain positive throughout this time. Not just for Tom’s benefit but also ours as we were a team and a force to be reckoned with!

This coping strategy can be best described as MUCHness:

M – Music
The strength that music can provide during dark times can never be underestimated. The only condition is that “moody” music was banned in the house. The music we played had to be upbeat, fun and joyous: any song that would lift our spirits. Try it! It works! It’s funny how your mood can turn with a song from The Life of Brian!

U – Understanding
Fighting the situation and circumstance was never going to have a positive outcome. It was important to understand Tom’s condition, to accept and appreciate that the medication would eventually do its job. We needed to understand the situation in order to move on. “What lies behind you and what lies in front of you pales into comparison to what lies inside you” (Ralph Emerson).

C – Celebration!
Our journey has been rocky and certainly uncharted. Each day has been a challenge. We have however ensured that each achievement, however small, has been acknowledged and celebrated.

H – Humour
Our strongest ally in our fight against the year from hell! We have tried to laugh and find happiness in everything that we have done or seen. The ability to smile and laugh about the smallest of things should never be underestimated. A smile is a curve that sets everything straight!

I am delighted to say that Tom is now on the road to recovery and is making great progress. He, just like us, is now beginning to rebuild and take control of his life again. Would we re-live 2012? Not on your life! Will we take the learning and knowledge we have gained from it? Definitely!

The key message – keep smiling even when you are crying!

Richard

Involving pain patients in health services and learning how to self-manage pain whilst working

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This programme was funded by the Big Lottery Fund’s Awards For All programme in Northern Ireland.

In this edition of Airing Pain, Paul Evans travels to Northern Ireland to visit a patients’ organisation, the Patient and Client Council. The Council provides patients with an independent voice in the health and social care system by involving those who live with chronic pain in the decision-making process and supporting patients who wish to make a complaint, with the overall aim of improving patient services in Northern Ireland.

Louise Skelly, Head of Operations at the Council, describes her organisation’s work promoting information and advice across the healthcare system and using patients’ experience, suggestions and stories to raise awareness of chronic pain. She highlights some of the advances and improvements that the Council has brought about in recent years.

Board member of the Patient and Client Council, Rena Shepherd, who herself lives with chronic pain, contributes with her first-hand expertise and explains that with little adjustment on the part of employers, employees suffering from long-term pain conditions can still work full-time and be productive, with self-management pain courses proving very beneficial.

Issues covered in this programme include: Patient voice, patient experience, social care system, educating healthcare professionals, gaps in the health service, GP access, policy, opioids, making complaints, discrimination, urogenital pain and cancer.

Paul Evans: Hello! I’m Paul Evans, and 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. This edition’s been funded by the Big Lottery Fund’s ‘Awards for All’ programme in Northern Ireland.

Louise Skelly: There’s nothing as powerful as the patient’s story. And what surprises is that people in the system don’t always stop and listen to what are the real issues. They talk to their colleagues, they talk to other people, but sometimes they forget to talk to the people who actually use the service.

Evans: Not so very long ago, the idea of a patient being involved in his or her own pain management, or even having an opinion on it, would have been as likely as a flying pig. Doctor, as they say, or said, knows best. Attitudes for the most part have changed, but sometimes a catalogue of errors, be they clinical, administrative, or all to do with some policy change, compound to make a patient’s experience of the National Health Service at best –stressful, at worst – catastrophic.

Who then will champion the lone voice? In this edition of Airing Pain, I’m looking at one such patients’ organisation in Northern Ireland. The Patient and Client Council was set up in 2009 as a powerful and independent voice for people. Its Head of Operations is Louise Skelly.

Skelly: The Patient and Client Council is an independent body which is actually set up to be the independent voice of patients and service users in Health and Social Care, and our independence lies in that voice, and having that evidence base, and what are the issues for people. And we work with the Health and Social Care system to try to bring about improvements in services for people. And we support individuals who wish to make a complaint, we do a lot of work around involving people in decision making, so that’s one of the reasons we’ve got involved with people who have suffered from chronic pain.

Evans: Are there any ways that Northern Ireland differs from mainland UK?

Skelly: One of the big advantages that we have here is that Health and Social Care is integrated, so it should, theoretically, be a seamless service for people – that’s debatable. But one of the other things that is a particular gap for patients here is that we don’t have a single advice and information service unlike in Scotland where you have NHS 24 and you have – in England – you have NHS Direct, so they have a single advice and information service. That’s a big gap here in Northern Ireland: what people tell us repeatedly – they don’t have the advice that they need. So we’ve been working on and we’ve now got a scoping paper which has been approved by the permanent secretary, and actually this morning I was in a meeting where we’re moving forward with the business case for that.

Other things that happen across the ‘water’ which we don’t have here is – there’s not the walk-in centres, the 24-hour walk-in centres for direct access. And again, that’s an issue, and what we’ve found is a lot of our patients end up in A&E, totally inappropriately. We have been campaigning for an improvement in GP out-of-hours, and GP access. There’s an element of blaming patients for being in A&E, but the reality is they don’t have an awful lot else – nowhere else to go to. When they’re worried, that’s where they end up.

Evans: So would you act as a kind of ombudsman?

Skelly: Well, to an extent, yes. But there is a very discreet role, which is the role of the parliamentary ombudsman. Our role is very much around working in the system, working with individual patients, working with groups of patients who have issues, and in the whole broader involvement agenda. And we provided information and advice. We also promote the provision of information and advice across the system. So we have provided a range of services which are around patients and service users. And Northern Ireland’s quite different in that we have Health and Social Care under the one umbrella organisation, under the one department.

Evans: It sounds as if there might be a gulf between those who provide and the customers, if you like, the patients.

Skelly: Well, there can be. And one of the things we do is we work with the providers, as well as the patients, to promote the whole involvement agenda. There’s nothing as powerful as the patient’s story, and what surprises is that people in the system don’t always stop and listen to what are the real issues, they talk to their colleagues, they talk to other people, but sometimes they forget to talk to the people who actually use the service. And that is when the real experience comes to the fore that is of so much value for everybody to learn from. And we do a lot of work in that, promoting that right across the system.

Evans: Do you have an example of a patient’s story that might influence the profession?

Skelly: We have lots of stories. But one that sticks to mind is recently I was working with a young man who needed to get into genito-urinary medicine services, and he came to us because he had a very poor experience: first of all of finding out about the service, and when he got there, getting into the service, he didn’t realise that there was a big queue which ran out and up the street. And the whole experience he found very degrading. And he came to us because he felt this was a big issue. Once he got into the service, and the actual treatment carried out was actually very good, but the issues were around access, information and simple things like if you needed to come back and you needed to phone in to change your appointment, the phone didn’t work. So lots of simple things around how the system wasn’t working from a patient’s perspective. And as a result, I encouraged him and supported him to meet with the manager of the service, with the people who commissioned the service, and we were able to facilitate him to tell his story.

And when I spoke to the nurse manager who’d been managing the service for many years, I said to her ‘Did you ever, you know, ask the patients what it was like to stand in the queue or what it was like, you know, to try to get information about your service?’ she said ‘We’ve made a number of changes to the service, but we talk to the other staff’, and that was so fundamental to me that they hadn’t actually asked all these people who stand in the queue outside the door, for maybe an hour or two every morning. But, you know, the fact that she hadn’t stopped to ask them what’s that like, what’s that experience like, and as a result we were able to work with them to bring about a number of very significant changes, not the least of which was a new phone system.

Evans: In terms of pain, you have a pain steering group, what does that do?

Skelly: We have a small group of patients, and there’s a doctor on that as well, and some other people who have an interest in this area, local advisors. And what we’ve been working [on] for the last year – to raise awareness of chronic pain and how that affects people’s lives. It became clear to us that there are individuals who, for a variety of conditions, suffer from chronic pain, and some people who have no condition at all that has had a diagnosis, but certainly pain is a big part of their everyday life, and we felt that they had a voice which was unheard in the system. So we have been working with the MLAs [Members of the Legislative Assembly] in the Assembly. We had an event up in the Assembly where patients were able to speak directly to the Minister for Health and the Health Committee. We then held – worked with the Pain Alliance around the Pain Summit.
Evans: That’s Louise Skelly, Head of Operations of the Patient and Client Council in Northern Ireland. And you can hear more about the Northern Ireland Pain Summit that she was talking about in Airing Pain programme number 35, which, like all editions of Airing Pain, is available for download at https://painconcern.org.uk.org.uk. Jay Flood Coleman is a member of Patient and Client Council’s pain strategy group.

Jay Flood Coleman: When the Patient and Client Council was initially setting up local advisor committees, I became interested because I always thought that for people who have been through a lot of health experiences, there must be a way of feeding that experience back into the system. I thought I would like to apply to see if there was anything I could contribute on a local basis. And I was interested to see what would happen, and how it would actually filter through to the health boards, if you were to actually try and give information on the ground about what you thought was affecting people locally.

Evans: So you committed as a patient?

Coleman: As a patient, yes. My pain would have started initially with probably my second brain haemorrhage, because I had two brain haemorrhages, and after the second one I had about a year in hospital and rehab unit, 5 years in an electric wheelchair. And I lost my dominant side: I used to be left-handed, and that’s the side I lost, and also I lost a quarter of my brain. And I found after that time that I had a series of health issues which affected my pain levels, so what started off as a medium pain quickly seemed to accelerate the more I tried to become independent.

Evans: So you’re in the pain strategy group of the PCC [Patient and Client Council]?

Coleman: Yeah, I haven’t really thought about it being a pain strategy group as such. Yes, initially what was happening was I was bringing up chronic pain repeatedly as an issue at my local advisory committee, because I thought that it was affecting a lot of people within the population in Northern Ireland, and I thought that it was something that needed to be addressed.

Evans: How does your experience then and your thoughts, how does that help the strategy?

Coleman: It helps if you can share your personal experiences about the difficult road of how you actually handle pain, the ‘tunnel vision’ that you can get, and the depression that can actually come in from trying to just do it medically, and trying to fathom out what else might be available to help you ‘see the light at the end of the tunnel’.

I think, basically, like a lot of people you would go to your local GP to try and see what can be done about the pain levels you are experiencing. And the most important thing for us is to actually be believed, because some of the pains that you are experiencing may not be detectable on an X-ray machine, but they are very vivid within your own experiences. And then you quickly find that you accelerate within the pain medication, not always knowing exactly what it is you’re taking, I think, at times, which is a very dangerous thing. And then after you get to a certain level, you actually realise, as well, from the interchange you’re having with your family that you’re maybe not even contributing in the same way as you used to, as a member of that family, and that can be quite scary. So, for a lot of people, I think they’re trying to find a way out of that experience, to a ‘new dawn’, if you like, to what they can do about it, rather than what’s been done about it in the past.

Evans: How do you mean, trying to find a ‘new dawn’?

Coleman: Well, I think for a lot of people it is – they do find that they’re in a very dark place, because all they can do is – a lot of people are on what I would call opioids – or they are called opioids – and I find that they have a damaging result to a lot of people. I know quite a few people who are on such a large dosage they should not be out and about sometimes. Some of them are still driving, they shouldn’t be out driving. But I think the main thing is that you don’t realise what these are doing to your body, you don’t realise how your body then adjusts to the medication, and you don’t realise what effect they are having, if any, after a long term of many years’ medication. And it’s then trying to figure out, what can you do about that?

Skelly: We are all service users, at the very minimum are all registered with their GP, so we need everybody to get involved and have a say what’s – Health and Social care is the one service that we’re all going to use at some stage in our lives, and as we get older, the chances are we’ll use it more. But some people, even children, are very heavily involved, right from the start, just because of, if you like, whatever hand nature has dealt them. And we want to provide that avenue for people to have a say which is appropriate to them. So yes, we do have those people who have maybe a single issue, and are very passionate about that issue, and we welcome them. But at the other end, we have people – the whole spectrum.

And of course then we also have the complainants. Some of those cases who come to us are very difficult cases, and very harrowing cases, and of – the service works really well for many, many people, but for some people, things go wrong, unfortunately, and we’re here also to support those people. Most people don’t actually want to complain, but they do need help when they really have a complaint, and sometimes the cases that we are dealing with are at the very hard end of the scale, and they need that support. Sometimes that support is as simple as helping them to write letters, other times it’s attending meetings, there’s the whole – and we can be working with them maybe over a period of months to help them to get some issues resolved. Some are resolved quite quickly.

Evans: I suppose a big problem for people – and for health authorities – with complaints is the authority you’re complaining against or the person you’re complaining against becomes frightened of talking to that person, in case he says something that costs a lot of money. Sometimes people don’t want to go down that route, they just want either a ‘sorry’, or ‘please, can you get me a phone number, please, can somebody speak to me at the other end of the line’.

Skelly: Yes, it is an issue: the system can be defensive. And what we are doing is we are working with the providers and the commissioners to change that culture, but that’s going to take some time. We do think there has been a change. I think there’s now a recognition, for example, that a lot of complainers – actually all they want is for someone to say ‘sorry’, or quite often what they say ‘We want some sort of reassurance that my experience is not going to be the experience of another person or another family’. That’s really, really important to complainants. So if we can work with them early on in their process to get that – sometimes that’s as good an outcome as they can have.

We’ve had, for example – recently, we’ve been working with some women who had an issue with pain relief and maternity services, and they had a very bad experience with one particular hospital here in Northern Ireland in terms of – quite, almost draconian attitude to pain management: ‘Oh, you’re having a baby, just get on with it’ type of thing. And there was an attitude amongst some of the midwives in that particular unit. And what we did was we worked with the Trust and we got some of the ladies involved with training the staff to tell them what their experience was like.

And as a result, there was a new programme put in around pain management in that particular area. But what one of the service users, one of the ladies came back and said ‘You know, thank you so much I’m now able to get on with my life!’ Because she had such a dramatic time that, you know, she wanted to have another baby, she wanted to go back to work, all of that, but because she couldn’t get past this bad experience, being supported to get past it and move on with her life that made such a difference, and she felt somebody had listened to her and then had provided her with a way to try to make a difference for others, and quite often that’s what people want. If they have a bad experience, they want some reassurance that that’s not going to be repeated for other patients, and that’s very important to them.

Evans: Louise Skelly. Of course, dealing with the NHS is just one part of life with chronic pain. For those still in the workplace, an employer’s attitude can make all the difference between sinking and swimming. Rena Shepherd lives with chronic pain, and she’s also a board member of the Patient and Client Council in Northern Ireland.

Rena Shepherd: As a board member, I advocate for and represent the patient, ensuring that the patient or the service user’s voice is heard by all the commissioners, by the providers of services.

Evans: So you’re that link, if you like, between what the patient says and making sure it gets to where…

Shepherd: It gets to where it’s heard. It needs to be heard.

Evans: You also have a business background.

Shepherd: I started my life out in Price Waterhouse, and I then moved to the oil industry, I was marketing manager with BP Oil. I then went to work for a publishing company, and of late I worked at an executive level in Royal Mail.

Evans: And that experience must be invaluable dealing with the suits of the NHS.

Shepherd: Yes, absolutely. The experience has been invaluable. The experience has taught me that with a little modification on employers’ parts, a lot of people with long-term conditions, not only with chronic pain, but with various other long-term conditions, can actually work full-time and be very, very productive.

Evans: Are you involved in talking to businesses and to employers about this?

Shepherd: Yes, I am currently working with a group to try and get an organisation together that will link employers with healthcare providers, and get employers more inside the head of people with disabilities, and with the providers of healthcare in order that the two can be brought together to work better for the service users. Yes, I have spoken to a number of employers, I will give of my time if employers, for arguments sake, want to set up some self-management courses. That’s the thing that I have found very, very beneficial. Very, very beneficial. And the scientific evidence is out there for people who have completed self-management courses: they see their GP less often, sometimes they can reduce their medication, their sick absence decreases, they become more productive, their self-esteem goes through the roof, and various other benefits that will have a knock-on effect on productivity.

Evans: Have you had any success with employers taking on a self-management group?

Shepherd: The employer that I’ve had best success with was with Royal Mail. When I was with Royal Mail Group, Royal Mail were very, very accommodating for people with disabilities of any description. Royal Mail also had a Disability Action Centre which they set up, which is an online service for anyone who had a long-term condition themselves, for anyone who was managing an individual with a disability or long-term condition.

Evans: I guess nobody wants to disadvantage somebody with pain. But it’s knowing how to do it.

Shepherd: It’s knowing how to do it, it’s knowing how to do it, and again, as I said earlier on, it’s the modifications and the adjustments can be so small, I mean, so much can be gained for such a small adjustment. I think it’s about two things: it’s about getting people, like myself, to be honest about their condition, and that’s very, very difficult. You know, Northern Ireland is a very, very small place. There’s always the scary factor, if people do know that you are living with chronic pain that it can make you tired, will they worry about your performance, will they worry about employing you? I think personally I’m in a very lucky position that I’ve proven myself. I’ve lived with chronic pain for years, and years, and years, and I’ve proven I can do the work and manage my pain. But for other people, I think we have to work harder to make people not be so scared of coming forward and talking about their conditions.

Evans: In many situations, it’s a ‘black and white’ thing. If you tell your employer that you have chronic pain, immediately they say ‘Right, we will sort this out, we will manage this’, whereas in actual fact, it’s the person with pain who wants to manage it in his own way.

Shepherd: You tell them what you have, and then they will put their solution on it, where in actual fact all you need is to tell them how you need to manage. And I think that’s just from fear. They’re running scared of DDA.

Evans: DDA?

Shepherd: Disability Discrimination Act. A lot of employers are running scared of that. A lot of employers feel that we’ve got this policy so we must adhere to the policy, strictly to the policy, not realising that most people who are living with a chronic condition of any description are best placed to manage it. And if they can come to the employer, if you can come to your employer with your management plan, and say look ‘Can you fit in with this?’, you’ve a much better chance of being allowed to manage it yourself. But more progressive employers will absolutely hand it over to the employee in question. You know, they’ll say ‘Look, you know what’s best, it’s your condition, you know how best to manage it, and you know what’s best for you’. So I think it’s about being brave enough to come forward.

Evans: Rena Shepherd, board member of the Patient and Client Council in Northern Ireland. At this point, I’ll just remind you of Pain Concern’s usual words of caution that whilst we believe the information and opinions on Airing Pain are accurate and sound, based on the best judgements available, you should always consult your health professional on any matter relating to your health and well-being. He or she is the only person who knows you, and your circumstances, and therefore the appropriate action to take on your behalf. Back to the Patient and Client Council, and its Head of Operations, Louise Skelly.

Skelly: Health and Social Care is such a big system here in Northern Ireland, and there are 77 000 staff; the Patient and Client Council have only 30 staff, so we’ve got to prioritise, and we’ve got to think what are the issues that we can actively have an impact on. So each year we work with the patients to tell us what are the priorities with them, and then we make those into our priorities.

And again, because we’re small we have to think of ways of punching above our weight, so we have developed a membership scheme which is for people right across Northern Ireland. We would like 1% of the population on our membership scheme, [that] we launched it in 2011. We now have 9000 people, and they are people who are actively interested in what’s happening to Health and Social Care, who keep in touch with us via e-mail, via a whole range of ways, and they tell us what are the issues for them, and we use that information to feedback into the whole system. That’s a really effective way of how people can get involved here in Northern Ireland.

Evans: So how would a patient become involved in this?

Skelly: The membership scheme is open to everybody. You can register online, you can ring in to the office here. Northern Ireland has a legacy of community and voluntary groups: there’s about 7000 community and voluntary groups here in Northern Ireland, which is huge in size. But not everybody, especially people who are carers of people who have maybe long-term diseases and chronic illnesses – they can’t always get involved in groups. So the membership scheme, as well as having some groups on it, is a way for the individual to get involved.

Now they can get involved as little or as much – people, when they sign up, they tell us what their area of interest is in. And they can keep in touch through e-mail, they can come to meetings, conferences, workshops, whatever’s going on around that particular issue – very much their choice what it is they’re interested in. And we find their interest changes depending on what their needs are. We may not hear from them for a while and then suddenly something happens within their family, or whatever that they’re interested in, and they get involved in that particular issue. So it’s very much led by the people.

Coleman: I’ve input my experience basically by first trying to make people aware of how extensive I think chronic pain is, within lives, within the community, and how insular I think lives have become because of it. But also how narrow I find the opportunities are for trying to get out of that ‘tunnel’ experience, and I think that’s been thankfully vindicated by other people’s experiences in other areas.

Evans: Are you optimistic for the future?

Coleman: I am optimistic. I wouldn’t even be here if I wasn’t optimistic. I was optimistic when a consultant first told me that I would never walk again, and I had to prove him wrong. And I’m optimistic when people tell me that things will only get worse within the economy. And I’m always optimistic because I think that unless you have optimism, then that affects so many things, not just your health, and we need to have a positive attitude in order to move forward in our lives.

As well as being an optimist, I’m also a realist, and I know that there’s only a certain amount of funds – funding that’s available. But one of the things that I personally would have a dream about is that, for some aspects of chronic pain –not all – that we would have locally facilitated chronic pain groups, because a lot of people in pain don’t want to travel very far because it is painful to travel. So if we could have locally, cheap groups of chronic pain management, facilitated by people who themselves have been in pain, and I think that would go a long way towards actually helping the system without costing a lot of money, but then of course there has to be a wider education programme going on as well.

Evans: The Patient and Client Council has been running since 2009. What difference have you made?

Skelly: We’ve provided people with a voice. We’ve also provided a very good evidence base over the last 3 years in terms of what are the real issues for people. And we’re feeding that into the system. For example, we have produced somewhere in the region of about 35 to 40 reports which are a very clear evidence base. Those cover issues from what are people’s priorities in terms of things that should be addressed through to issues around urgent care, transport, access to GPs, and all of that. And what we find is that the commissioners and the trust boards when they’re developing their plans, they rely very heavily on that information, so that has begun to filter into the system, and bring about changes.

We’ve made a lot of changes for individuals in terms of their care, but as well as that, with groups of patients, a bit like GUM [genito-urinary medicine]. And for example in cancer where we’ve been working with chemotherapy patients, who, when they become unwell between episodes of chemotherapy, find themselves in A&E. You know, here’s a situation where you are a chemo patient, and you were told ‘You’re not allowed to go to your granddaughter’s christening, because you can’t mix with the crowd, stay away from people’, and all of that, and all of a sudden you find yourself sitting in an A&E department for 5 or 6 hours with everybody, from flu to whatever around you. It just didn’t add up: why is this very ill patient sitting here?

So we worked with the system, we got two beds in the cancer unit for direct access. We got some improvements to the help line in terms of the advice and information they were getting. And now the numbers of cancer patients who go through A&E have dropped about 90% in the last couple of years. That’s one area where we have made a fairly significant difference, and there are quite a few examples like that.

Now what we’re doing – we’re just about to launch a questionnaire which we’re going to issue through the membership scheme. It’s a fairly big piece of research where we’re going to hold focus groups as well with the interested groups, and what we’re hoping to do is get many thousands of people through the membership scheme and through the wider population, who will come forward and tell us what their experience of chronic pain is here in Northern Ireland, what their experience of the services are, but also what their experience is in terms of how that impacts on their lives, because we want to take that information, and then take that back to the commissioner and the Trust and say ‘Look, what are you doing about this? How are you going to make a difference for pain?’ We would like to see a regional strategy around pain management, and we would like to see an improvement in the services. But until we get a really good evidence base, we think we will be [un]able to do that better. So that’s why this questionnaire, and this research project, is so important.

Evans: Louise Skelly. And you can find out more about how to get involved with the Patient and Client Council in Northern Ireland at their website, which is http://www.patientclientcouncil.hscni.net.

And don’t forget that you can download all the previous editions of Airing Pain or obtain CD copies direct from Pain Concern. If you’d like to put a question to Pain Concern’s panel of experts, or just make a comment about these programmes, then please do so via our blog, message board, e-mail, Facebook, Twitter, or pen-and-paper. All the contact details are at our website, which is https://painconcern.org.uk.org.uk. Last words from Jay Flood Coleman.

Coleman: I think people have become quite despondent with the health system as a whole, and don’t know how to be effective and how to make a valuable contribution. And I think the Patient and Client Council is one of the first small organisations – because in health terms, they’re quite small. They are trying to make a real difference, and they are trying to do things at an intelligent, fundamentally realistic level. Rather than just trying to do things for their own reasons. They’re trying to make a real difference, and that’s why I like to be part of it.

Contributors:

Louise Skelly, Head of Operations at the Patient and Client Council
Jay Flood Coleman, Patient and Client Council strategy group member
Rena Shepherd, board member of the Patient and Client Council.

Involving pain patients in health services and learning how to self-manage pain whilst working

This programme was funded by the Big Lottery Fund’s Awards For All programme in Northern Ireland.

In this edition of Airing Pain, Paul Evans travels to Northern Ireland to visit a patients’ organisation, the Patient and Client Council. The Council provides patients with an independent voice in the health and social care system by involving those who live with chronic pain in the decision-making process and supporting patients who wish to make a complaint, with the overall aim of improving patient services in Northern Ireland.

Paul also speaks to pain patient and member of the Patient and Client Council’s pain strategy group, Jay Flood Coleman, who shares his own personal experiencesof chronic pain which has been complicated further by a series of health issues.
Board member of the Patient and Client Council, Rena Shepherd, who herself lives with chronic pain, contributes with her first-hand expertise and explains that with little adjustment on the part of employers, employees suffering from long-term pain conditions can still work full-time and be productive, with self-management pain courses proving very beneficial.

Contributors:

Louise Skelly, Head of Operations at The Patient and Client Council
Jay Flood Coleman, patient and Council strategy group member
Rena Shepherd, board member of the Patient and Client Council.

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In pain? Don’t understand what’s happening?

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In pain? Don’t understand what’s happening?

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