Pain Concern

Learning to manage endometriosis and how support groups can help

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

Paul Evans visits an endometriosis support group in Belfast, and interviews founder Anna Jaminson and guest speaker gynaecologist Dr David Hunter.

Dr Hunter discusses the research about how endometriosis develops and people living with the condition describe their experience in depth, including the impact upon personal relationships with family and friends. Members of the support group talk of their immense relief at finding people with similar stories to share.

We hear about the difficulties in diagnosing endometriosis – often mistaken for other conditions such as Irritable Bowel Syndrome – but also about some recent improvements to its diagnosis and management and the crucial role of sympathetic healthcare professionals.

We also learn more about surgical treatments and their likely prognoses, including hysterectomy, and we hear about the physical, psychological and emotional impact of such surgery.

Issues covered in this programme include: Endometriosis, peer support, support groups, family, friends, relationships, hysterectomy, women’s pain, pelvic pain, vagina, bowels, adenomyosis, uterus, womb, nausea, vomiting, sneezing, coughing, diaphragm, periods, menstruation and IBS.

Contributors:

Dr David Hunter, gynaecologist
Anna Jaminson, founder of Belfast endometriosis support group
Linda Harris, group member
Nuala Campbell, group member
Robin Atchison, group member
Louise, group member.

Learning to manage endometriosis and how support groups can help

To listen to this programme, please click here.

Prefer a PDF?Download

Paul Evans visits an endometriosis support group in Belfast, and interviews founder Anna Jamieson and guest speaker, gynaecologist, Dr David Hunter. Dr Hunter discusses the research about how endometriosis develops and people living with the condition describe their experiences in-depth, including the impact upon personal relationships with family and friends. Members of the support group talk of their immense relief at finding people with similar stories to share. We hear about the difficulties in diagnosing endometriosis – often mistaken for other conditions such as irritable bowel syndrome – but also about some recent improvements to its management and the crucial role of sympathetic healthcare professionals. We also learn more about surgical treatments and their likely prognoses, including hysterectomy, and we hear about the physical, psychological and emotional impact of such surgery.

Paul Evans: Hello 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’s been funded by the Big Lottery Funds award for our programme in Northern Ireland.

Nuala Campbell: Every single month I was brought into A&E and every month I was just told that ‘You have a low pain threshold. This is what it’s going to be like to be a woman, you better get used to it. There’s nothing wrong with you, it’s just wind.’ I was kind of treated like I didn’t know my own body.

Evans: Now there are two aspects to today’s edition of Airing Pain: one is to explore a condition that affects 1.5 million women in the UK, and the other is to see how belonging to a support group can be a valuable aid to managing any chronic condition.

Earlier this year, I went along to the monthly meeting of the endometriosis support group in Belfast. Their guest speaker, gynaecologist Dr David Hunter, was conducting a question and answer session.

Dr David Hunter: Endometriosis is a chronic progressive condition which can develop at any stage throughout a woman’s reproductive life. It’s more common in women in their thirties and forties, but can present much earlier, and when it presents earlier it’s often very severe and aggressive. So it’s a disease that affects extra-uterine organs, the ovaries, the side walls of the pelvis, sometimes the bowel, and the area at the top of the vagina – the pouch of Douglas. The symptoms that it causes are chronic pain, pain with intercourse, pain with bowel motion and sometimes crippling menstrual pain.

It’s often associated with a very similar condition called adenomyosis, whereby the lining of the womb, rather than growing outside the womb or within the lining of the womb cavity itself, grows into the muscle wall of the womb. That’s a condition that presents a particular management difficulty because the only truly effective treatment for this condition is hysterectomy. Endometriosis per se, being an extra-uterine disease, can be treated by excision of the endometriosis and conservation of the womb. But when adenomyosis is present the improvement in pain scores is often much less, in the absence of a hysterectomy.

Evans: Dr David Hunter. And – dare I say it – something of a knight in shining armour for the Belfast endometriosis support group’s founder and driving force for 27 years, Anna Jamieson. The condition, as I mentioned earlier, affects at least 1.5 million women in the UK.

Anna Jamieson: We like to think of it as 1 in 10, because to us that means an awful lot. If you think that [for] each one of us here, there’s another nine ladies out there who have endometriosis. One patient has written ‘I feel like I am being hollowed out by a brillo pad.’ I don’t know if anybody else has had that experience, but I know I felt as if somebody was running a grater over my insides. One and a half million, 1 in 10 of us, suffer with endo and the same number of ladies suffer with diabetes, and yet look how widely diabetes is known about!

Seventy-three per cent of women have reported relationship problems: 10% within ordinary friendships; 11% say it has caused breakups in friendships or in relationships; 11 % find it difficult to look after children; and 39% say that it has caused significant problems between them and their partner – and that again is very sad. But in this little group I don’t think we allow that to linger – do we girls? We don’t. We are an upbeat group, we like to think that there are better days coming, and with the help of Dr Hunter who’s been absolutely fantastic to the girls here in this group. I think he knows more about our insides than we know. [Laughter]

Evans: Just tell me in simple terms so I can understand this: the tissue from the womb actually grows, spreads, outside the womb – is that right?

Hunter: Yes. There are a number of theories about how endometriosis develops, and the oldest of those theories is called Samson’s theory: at the time of menstruation, in addition to menstrual effluent being expelled through the cervix, some of the menstrual effluent is expelled through the fallopian tubes into the tummy cavity or pelvic cavity. In a number of women that tissue retains the ability to survive and plants into the tissue that lines the tummy cavity and then becomes viable. It then responds to the hormones that the ovaries produce on a cyclical basis and obviously each month bleeds, causes inflammation and may cause adhesions or scarring which tends to make things stick together.

Evans: Can it spread beyond the abdomen?

Hunter: Yes. One of our patients this evening had [this] disease very close to her lung. It can also be found in abdominal wounds or actually within pulmonary tissue, and that is not in keeping with Samson’s theory of development of endometriosis, which is one of the reasons why other theories have been postulated.

Linda Harris: I’m Linda Harris and I’ve suffered with endometriosis for about 8 years now. Mine caused extremely severe pain, with vomiting, with sneezing, with coughing, with hiccupping… And I had already suspected at that stage myself that I had endometriosis – in my diaphragm – and subsequently I found out I had it quite extensively in my pelvis and in part of my body wall and my diaphragm as well.

Evans: With so extensive a spread, what’s the treatment for that?

Harris: Initially to help diagnose it Dr Hunter did an MRI on the pelvis and again he knew that… he didn’t think that the endometriosis on my diaphragm was likely to be visible on the MRI, so they found it extensively on my pelvis but couldn’t see anything on my diaphragm; had that removed and was sent home hoping that the pain in my side was sort of maybe referred pain or that hopefully the surgery would improve that, but three weeks later the pain in my side was just the same – the surgery hadn’t helped that pain.

I had had some pelvic pain before but really nothing compared to the pain in my side so I went back and then got a further MRI which showed up the endometriosis on my diaphragm and in my body wall as well. Then I got referred via a cardio-thoracic surgeon to a liver specialist who did my surgery 6 months ago and my life has improved beyond recognition.

Hunter: The thing with your suspicions was you knew what you had long before I diagnosed it.

Harris: Yes. Yes.

Hunter: And it took a little bit of a while for me to get to the bottom of you.
[Everyone laughs]

Harris: Yes. The only thing I would say is that Dr Hunter at least believed: I think that was probably the most important thing after so many years for somebody. It may have taken a bit of work to get there and it certainly wasn’t a straightforward presentation or maybe a more normal presentation, but I suppose all I would’ve asked was for somebody to listen to me and to believe my symptoms rather than maybe, really, probably dismissing them for a long time.

So I think, yes, with endometriosis it’s not always simple by any means, but to just believe in your patients and, you know, together you can get there and the improvement in my quality of life, I would say also for my husband and my family: the improvement in his quality of life is really beyond belief. He would never really have known me as a well person, and for him not to be running about at three in the morning with a bucket for me to be sick in and waking up has been a huge help for both of us. So thank you very much to Dr Hunter and the team.

Hunter: One of the most important things that I’ve learnt in my medical career is the importance of listening. People know their own bodies. If you listen carefully then people will tell you what’s wrong. There’s nobody who can diagnose endometriosis without either looking at it directly or having a biopsy specimen confirm it, but patients will often direct their clinician to their diagnosis, and it’s listening to the direction that I find very important. And listening as well to what the patient wants from her treatment because not everybody wants the same thing. And again, another blunt question that I ask sometimes is ‘What do you want to take from your treatment?’: because we can’t always fix everything.

Nuala Campbell: I’m Nuala Campbell, I’m 30 years old, and I have been suffering from endometriosis since I was 15. It affects everything, it affects – like I have chronic fatigue along with endometriosis, so it affects my ability to do a lot. I can’t go out and do all the social things that someone at 30 years old might want to do. I can’t have children, I was told around when I was 26 that I would never have children naturally. At 15 I was being brought to hospital either by ambulance or by a parent who was totally freaking out, so every single month I was brought into A&E.

Evans: Every month?

Campbell: Every month, every month. And I was just told that, ‘You have a low pain threshold, this is what it’s going to be like to be a woman, you better get used to it’, you know, ‘there’s nothing wrong with you, it’s just wind’. I was kind of treated like I didn’t know my own body. Even after I had my first laparoscopy to diagnose, they drained a lot of internal bleeding from my pelvis, so I lost around a stone and a half of weight when I came out of surgery, and they still didn’t diagnose me with endometriosis; they let me go home. It was another 3 years after that before they said it was endometriosis.

Robyn Atcheson: My name is Robyn Atcheson, I’m 24, and even my doctor was so convinced that there was nothing wrong with me that whenever I had the operation I was told, on my way into theatre, that there wouldn’t be anything wrong with me, that I would wake up and I would still not have an answer [Laughs].

I should point out that I asked for this operation specifically to get an answer, whether it be positive or negative. And whenever I came round from the operation and it turned out that I did have endometriosis, there was actually too much of it to remove at the time, so I had to wait a further 6 months to get it removed. I’m still recovering from that, it’s only been about 6 or 7 weeks – 7 weeks now. But just having that diagnosis makes a world of difference. You can tell people, ‘This is what I have that’s wrong with me’, it’s not just a generic ‘I’m in pain a lot of the time and nobody knows why.’ This is my condition, you can look it up on the internet, you can read blogs about it, you can look at what other people are saying about it and people can then start to understand and get a bit of an awareness of what it is that you’re going through.

Evans: Do your friends understand?

Atcheson: The friends that I have now do. Whenever I first got ill, I have lost a lot of friends since then. You have to cancel a lot of social things, you maybe have to alter your lifestyle a bit, you can’t do as much as you used to be able to. And some friends can’t really see that whenever you look the same on the outside that there’s something different that’s happened to you that you’re struggling with, maybe behind closed doors, behind the smile that you wear every day.

For a condition like endometriosis, a gynae condition, it’s not always the easiest thing to talk about and some people don’t like talking about it. My best friend is a boy – it’s been interesting educating him about it, but he’s actually been one of the most supportive of my friends and he really tries to understand where I’m coming from. And he would be the one that would help me out the most: he would notice when I’m having a bad day and would help me carry things or would walk me to my car and things like that. So I think that the friends that I have now are probably the truest friends I’ve ever had because they’re the ones that know me, pain and all, and accept me for that.

Evans: Is diagnosis a problem?

Hunter: A diagnosis is very problematic, and there is a delay in diagnosis of 10 years on average between the onset of symptoms and diagnosis within the UK.

Evans: Ten years is an awfully long time.

Hunter: It’s dreadful.

Evans: Why is that – just because it’s a problematic diagnosis or because people have to wait too long?

Hunter: I think it’s because the symptoms that women get with endometriosis tend to be non-specific and there isn’t a single symptom or group of symptoms that patients would have that would prompt GPs to initiate a diagnosis and treatment. Fortunately, that is changing and GPs are becoming more aware. I spoke with a group of GPs just this evening and one of their primary concerns was when they should refer patients with chronic pain. So I think GPs are becoming more aware of the diagnosis.

Evans: So how could it be misdiagnosed, then? What other things could it be?

Hunter: We often see girls who are told that their periods are just as they are, that that is their lot. We see girls who are told that they have irritable bowel syndrome, and we see patients who’ve advanced quite far through an infertility, investigative network without having diagnostic laparoscopy to confirm or refute a diagnosis of endometriosis.

Evans: As a teenager, knowing that you have problems, what did it feel like to be told that you have wind, or ’You’re a woman, get on with it’?

Campbell: Frustrating. You kind of lose the will a bit, you know? You’re kinda, like, well, if that’s right and this really is what it’s like to be a woman, I don’t want to be a woman anymore, I don’t want… like, this is me until I hit menopause at whatever age. It’s so disheartening to think that you’re just going to be left like that for the rest of your life and you just have to deal with it. So it’s quite scary. It would depress you quite quickly if you didn’t have the right people around you.

Evans: When did you start to have the right people around you?

Campbell: I suppose I did a lot of online research myself, and I only discovered this endometriosis group maybe 4 months ago –a I was never told about it by any GPs or any gynecologists, nothing. So I was part of endometriosis groups online and got to read a lot of stories from other women who were going through the same thing, so I got a lot of reassurance from that. Because when you’re sitting in pain all the time you have thoughts and you think you’re going mad, like I used to think ‘I wish I could give this pain to someone else for a day, to see if it really is this bad!’ or ‘Do I have a low pain threshold?’ and then you hear that all these women are thinking the same thing.

Evans: You say you’ve only been coming to this endometriosis group in Belfast for 4 months.

Campbell: Yes.

Evans: How important is a group – a physical group – rather than meeting online?

Campbell: So important. I really, really enjoy coming here. I look forward to it every month. It gets frustrating sometimes in life and sometimes you just need somebody to go‚ ‘Yeah, I’m feeling the same way’ and you’re like ‘Oh, great, I’m not alone!’ And even just coming in, being surrounded by so many women who try to remain positive about the disease and do their best to kind of stay on top, it has such a lovely impact on your life and your ability to cope.

Louise: My name’s Louise and I am new to this endo pals group. I just went last week, having read an article on endometriosis, and I got in touch with Endo UK, or Endometriosis UK, and saw that there was a support group nearby. I’ve been living alone with this for a very long time, so this is quite new to me.

Evans: Tell me how endometriosis affects you.

Louise: It, basically, is like somebody stretching my whole bowel area: actually as well as even below that – but as far up as my bowel area – like a huge elastic band to the point where it’s almost ready to break and then basically searing a hot poker over it. In fact I’ve fantasised at the time of going down to the kitchen and getting out a knife and literally just cutting a big square in my tummy and just lifting out this block of a problem, because it is just so excruciating. And I know the pain is so strong that I wouldn’t actually feel it if I did that, because of the pain of endometriosis.

Evans: And how long have you had it?

Louise: I’ve had it for 22 years. I’m 34 now, and just like Dr Hunter said, it was about 10 years before I got diagnosed and I diagnosed myself. I saw it in Company magazine when I was about 20 and it said ‘Period Pain Put Me in Hospital’ – it was one of their front stories. I grabbed it from the shelf and I got in touch with what was then the National Endometriosis Society. They were able to give me a referral to somebody in my area here in Northern Ireland.

Evans: You’ve just joined this endometriosis support group in Belfast, this is your second visit – how useful is it?

Louise: I’m still taking on board everything that I have learned about endometriosis, so that is just mindblowing and I just think it’s amazing to be meeting all these girls who have such a wealth of information but are so determined to promote endometriosis awareness and to actually try and improve the services that are out there. I wish, to be honest with you, I’d known about them – well, the second I had endometriosis, because I’ve lived in the dark with it for so long. And to be in a room where there are actually other people who have gone through that… I’m still taking it in, actually, but it does give me hope, and I know I’m not alone and I know that it means I can still manage to have a family at some point and maybe I can have a job: things that I had written off.

Evans: How many women are offered hysterectomies too early, do you think?

Hunter: I can only comment about what happens at my clinic. And obviously the choice to undertake a hysterectomy is a very big decision that a woman has to take in terms of fertility aspirations and loss of femininity – these things will have to be considered. And I know that women who have a hysterectomy younger tend to have a very high incidence of post-treatment mood disturbance (depression) because of regret about undertaking the hysterectomy. So, I can’t give you a figure, but certainly we counsel women very thoroughly and don’t rush to hysterectomy in most cases [Laughs]. We have a young lady here who was unsure for many years, actually, about whether or not she wanted to have a hysterectomy.

Evans: There was a lot of laughter.
[Women laugh in the background]

Hunter: Mmmm! There wasn’t a lot of laughter for many years.

Jamieson: There were a lot of tears the morning of the surgery, believe me.

Evans: [Turns to Jacqueline.] Do you mind sharing this? What you went through?

Jacqueline: From the age of about 15, I’ve been in severe pain and for many, many years, I was misdiagnosed with everything under the sun. I struggled for a long, long time, and I was one of the lucky ones: I had my family. The morning of the surgery, I still was in tears, but I am now 11 weeks post-surgery, and I’m pain-free for the first time in 23–24 years.

Evans: Can you explain to me what you struggled with?

Jacqueline: For probably 3 weeks of the month: severe, severe pain. Now I can sneeze without being doubled in two and have pain in my pelvis. I can straighten up and hold my children. My children don’t have to say, ‘Oh no, you can’t do that because Mummy’s belly’s sore or Mummy’s tummy is sore.’ I can walk up the stairs on good days – there’s not a problem. That pulling, dragging, horrendous pain is not there anymore and I’m just so thankful that, touchwood, it won’t come back.

Evans: Does that mean that Jacqueline no longer has endometriosis?

Hunter: Well 90% of people who undergo the type of surgery that Jacqueline has undergone will remain disease-free at 5 years, and Jacqueline’s case demonstrates very clearly that women who suffer with endometriosis don’t fully appreciate the impact that their disease has on their quality of life until after they receive treatment. When they’re better and they can look back, they realize how poor their quality of life was. People do accept it, because they’ve been told, ‘This is your lot’, and they accept that this is [their] lot. It’s only after treatment, when life is better, that they can look back and say things were miserable.

Jacqueline: You get to a certain time – it builds up and builds up throughout the month, and you get to a certain point where you say, ‘I cannot do this anymore; I can’t take this pain anymore’. Then you get a bit of release because you have your period and that sort of gives you a bit of release, and then it starts to build up again. The only other time that I was pain-free was [during] my three pregnancies, but I can honestly say I put off the hysterectomy from when I was about 28/29, and Dr Hunter didn’t want to do it either because I was so young and I hadn’t had my family. Now that I’ve had it, I just say it was the best thing – because I’ve had my family I can say that. I know others that are trying for it, [for whom] it’s not the best option; it’s not the right option, but for me, it has been.

Hunter: One of the first questions that I ask people when they come into the room is, ‘Have you finished having your babies?’ It’s a very blunt question, but it helps to direct treatment. Jackie wasn’t sure. So if someone isn’t 100% sure, then we can’t do a hysterectomy.

Evans: So what are the options for those people?

Hunter: Well the options then are either to treat surgically and conserve the uterus, and then add in some Antivert medical therapy, or just to treat medically by turning the ovaries off and effectively rendering patients temporarily menopausal.

Evans: But that is temporary?

Hunter: That is temporary. It doesn’t work for everybody. And if treatment is discontinued about three-quarters of patients have a flare-up of their symptoms.

Jamieson: I set this group up over 27 years ago because when I had endometriosis and [was] facing a hysterectomy, like Jackie, I kept putting the hysterectomy off. Every time I was told in that room over there that I had to have a hysterectomy, I would come out and say to the nurse, ‘I’m not going to have a hysterectomy.’ So I set the group up because I was actively looking for somebody in the same situation. I just needed to talk to somebody and that is why this group was set up – just so that we could talk to one another.

Anyway, I set the group up, and one by one, we all came, and it was called the Hysterectomy Support Group in those days. And then one after the other after the other girl coming in was having her hysterectomy because of endometriosis, and she was in the same situation as I was, saying ‘No, I’m not ready for a hysterectomy.’ Please let me make you understand tonight that unless you are, you never have it. Anyway, we had to find a way around, supporting each other and supporting the girls who come in. I’m just looking tonight at Jackie, and I can tell you the night that Jackie walked through the door there, another lady and myself had to go down to the door and help her into a seat. We were using the kitchen in those days – do you remember that? Jackie could hardly walk. Now look at her! I am a firm believer in the fact that if you can find somebody else to talk to, that is really one of the best things that you can do.

We are here because we have been helped. Carine and Lara…and Tracy’s been here since she was 19. And I’ll not tell everybody how old you are now; I know you. But Tracy came here when she was a 19 year old, having been told then that she would have to have a hysterectomy. Tracy, with David’s help, was able to get through life. Tracy was really very, very bad. We shared the same GP. We have our meetings on a Thursday night, and I had to see him on a Friday for a blood test, and I walked in, and I said, ‘Before I get this blood test, I want to tell you that there’s a wee girl who comes to our group and her name’s Tracy, and she really needs to see somebody else.’ When Tracy went for a letter for a second opinion, she got it and she was able to go to Middlesbrough. When she came back a couple of weeks later, I went to visit her, and she said, [Gasps] ‘I met this lovely young doctor and he’s from Belfast!’ [Laughter] That was David, and when he came over here and got his consultancy post, and even before that, [he] was always very willing indeed to come along and support us as we supported each other.

Evans: How important is it for you to meet patients like this in this informal gathering?

Hunter: I love coming along here. [Laughter]

Evans: And not just for tea and cakes? [Laughter]

Hunter: Not just for tea and cakes. [Laughter] I think it’s great to get the feedback that we get from a group like this because we have patients here – some of the girls here haven’t done as well as others. Some of them continue to suffer and it’s good to have that feedback as well as the positive stories. And it’s heartening for me to see the fruits of my labour because it’s great to know that I can make a difference.

Evans: My thanks to David Hunter and the ladies of the Belfast endometriosis group for letting me sit in on their meeting. If you’d like to find a support group in your area, then check out the Endometriosis UK website, and that’s at endometriosis/uk.org. My usual words of caution are that whilst we believe the information and opinions on Airing Pain are accurate and sound based on the best judgments available, you should always consult your health professional on any matter relating to your health and well-being. He or she is the only person who knows you and your circumstances, and therefore the appropriate action to take on your behalf.

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. I’ll leave you with the ladies of the Belfast Endometriosis Support Group.

Member of the Belfast Endometriosis Support Group: I haven’t been able to wear jeans in 4 years, and yesterday, I wore jeans for about 10 hours. It was the best feeling in the world, just being able to wear jeans, because I’ve been wearing loose-fitting clothing for 4 years, in fear that [jeans] will hurt me. I haven’t reached the ultimate goal, which is to wear jeans while eating pizza, because eating cheese triggers my pain. It isn’t a very exciting goal for a 24 year old, but to just wear jeans and eat pizza would be great.

Member of the Belfast Endometriosis Support Group: Anna, not being well herself, nor her husband, came up on the morning of my surgery, and she sat on the bed while I cried my eyes out. She was a lifesaver when I came here 15 years ago. She’s never let any of us down. I just want to say thank you, and I’m sure the rest of the girls want to say thank you too. [Applause]

Contributors:

Dr David Hunter, Gynaecologist
Anna Jamieson, Founder of Belfast Endometriosis Support Group
Linda Harris, Group Member
Nuala Campbell, Group Member
Robyn Atcheson, Group Member
Louise, Group Member
Jacqueline, Group Member.

A look at how experts from different backgrounds work together in multidisciplinary pain teams

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Presenter Paul Evans travels to Northern Ireland to meet a multidisciplinary pain team at Craigavon Area Hospital, including doctors, psychologists and physiotherapists, led by Dr Paul McConaghy. We find out how cases of chronic pain are discussed by experts of different disciplines and how management strategies are then put into place.

The importance of educating GPs about chronic pain is discussed, as well as the need for empathic and respectful professionals.Paul Evans sees how the team works by sitting in on a meeting about an example patient: Dr Sam Dawson presents the case of a 38-year-old woman with chronic lower back pain. Referred by her GP, treatment so far has not led to improvement and she is now experiencing depression.

The team discusses the strategies they would use in working together with such a patient. Psychologist Dr Nicola Sherlock stresses the importance of treating depression as it not only hinders the management of a person’s pain but worsens the symptoms, and she and physiotherapist Michele McGeown explain the importance of dealing with psychological issues, particularly fear of movement, in helping patients improve their physical fitness.

The team also talk about how they could use TENS (transcutaneous electrical nerve stimulation) machines to help some patients and how medical doctors and psychologists can work together to understand how a patient is likely to respond to injections. Finally, Dr Jim McMullan explains how GPs can learn from and complement the multidisciplinary approach by listening carefully to the patient and taking into account psychological and social as well as physical aspects of their condition.

Issues covered in this programme include: Multidisciplinary team, psychology, physiotherapy, healthcare professionals, management strategies, lower back pain, depression, TENS, pharmacology, radiography, tailored treatment, combined clinic, fear, anxiety, exercise, the biopsychosocial model, managing appointments and communicating pain.

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

Today I’ll be examining the workings of a multidisciplinary pain management team to find out how cases of people with chronic pain conditions are discussed between experts of different disciplines and how management strategies are then put into place. I visited the Craigavon Area Hospital in Northern Ireland where the team is led by Consultant in Anaesthetics and Pain management, Dr Paul McConaghy.

Dr Paul McConaghy: At the present time our team consists of three doctors, three clinical psychologists, four nurses, and four physiotherapists, together with secretarial and typing support, as well as the interventions of a radiologist whenever we need it. We also have the support of a pharmacist and radiographer. So I’m delighted that we have such a comprehensive team and, certainly in my view, chronic pain is best managed within a team rather than by individuals. We don’t say we have a complete team yet. Patients with chronic pain can be quite challenging. They’re referred to us because no one else has managed to get on top of their pain.

We’ve also spent a lot of time educating GPs and we have very little problems with how our GPs manage things in this area. But the result of that is we now get much more difficult patients, patients who even GPs, who have more knowledge and more ability now, that they can’t manage. So we’re getting more complex cases, cases which have a lot of psychological and social issues, as well as complex physical issues. And it’s for this reason that we, for most patients, we involve our whole team. We meet up on a regular basis, we discuss our patients, and we decide on a treatment plan.

Evans: Can I see how your team works?

McConaghy: You’re very welcome to. We’re just about to start our meeting and you’re very welcome. Come in, and we’ll give you an example of a patient that we’d like to present.

Okay, so we’ll start the meeting and Dr Sam Dawson, one of our registrars, has done a clinic recently and would like to present one of the patients that he’s seen. He has some concerns about this lady. Sam.

Dr Sam Dawson: Okay. I saw a 38-year-old lady who for about eight years has had a history of pain in her lower back. She’s referred to us by her GP, who’s concerned that she’s become a little bit depressed by this situation. She hasn’t responded to any changes in the medication that the GP has made. He’d like a little bit of advice about the use of morphine in her case and whether or not there are any injections we can perform that might help her.

The pain is present all the time and gets worse whenever she does housework, that kind of thing. She’s afraid then that if she does anything strenuous, she’ll be sore afterwards. She’s quite convinced that there’s something seriously wrong with her, wrong with her back particularly, despite the fact that an MRI scan recently showed nothing seriously wrong, just some bulging discs.

So far her GP has treated her with tramadol, paracetamol, anti-inflammatories, and also tried amitriptyline, but she did have some side effects. They then tried pregabalin and physio, neither of which helped this lady.

She lives at home with her husband and three children. She’s struggling to sleep and wakes up stiff and sore, usually taking her a few hours to get moving. She lives at home on her own during the day, because her children are at school and her husband’s at work. During this time, she’s pretty inactive because of pain and because of fear about being sore afterwards. She feels quite lonely and is perhaps a bit socially isolated. I examined her today and she’s got quite restricted movement. Mostly, I think, because she’s afraid of provoking the pain. The tenderness is fairly general all over her lower back, but it’s mostly concentrated there.

McConaghy: Okay. Thank you very much, Sam. That’s a fairly comprehensive history. There are quite a few issues there that we see quite often in patients at the pain clinic. There are a number of things I think we can look at. First of all, Nicola, Sam mentioned that this lady’s been calling her GP, also mentioned that she’s becoming depressed. Dr Nicola Sherlock, Consultant Psychologist, do you think that there’s anything you could offer this lady?

Dr Nicola Sherlock: Yes, I think it would be very important to have a look at her depression, because what we know is that depression is a significant barrier to effective pain management. That’s certainly an area that we could get involved in as a pain team and would be a particular role for myself.

So what I would like to do with this lady is maybe invite her to attend myself for assessment, if she was willing to do that. During that assessment, I would take a full history in terms of her pain but also looking at other aspects in terms of the impact that the pain is having on her life and obviously a mental health assessment as well. If we think that depression is a significant problem, one of the treatments for depression would be to offer her a number of appointments for her to attend psychotherapy. Hopefully, that would help her manage her depression, which then in turn would help her manage her pain more effectively.

Evans: Psychologists and doctors talk about the pain circles.

Sherlock: Mm-hmm. Psychologists tend to like the term ‘vicious circles’. I think that in chronic pain, there are a lot of vicious circles, in that people can develop a pain problem and often there can be a lot of losses associated with that pain over time. I suppose initially when someone develops a pain, there’s a hope that in a couple of weeks—‘I’ll go to the GP, maybe get some medication. In a couple of weeks, it’ll begin to feel better.’ And then as time progresses and the months progress, it becomes apparent that this pain remains, and it’s still there. There can be a lot of confusion as to why this pain hasn’t resolved: ‘why is it still here?’ And that can have a significant impact on people in terms of mood as well and levels of frustration.

So that’s kind of the start of the pain cycle where the mood can go down. It can be the sense of frustration. Then, potentially, it can begin to impact on work, on social life, on relationships with people in the family because no man or no woman is an island. We all live within a context of other people in some sort of family relationship or in friendships. Pain can have an impact on all of those areas.

Over time, things can really, really spiral, where people can become more and more down about their pain, more frustrated, more angry – more angry that there’s not a cure for the pain, more frustrated that they can’t find the right doctor or can’t find the right treatment to take the pain away. There can be all of those losses associated with pain, which then can impact on mood.

Then we have, again, the fear that I talked about earlier – the fear of movement, the fear of exercise, which can lead to people becoming quite deconditioned physically. That can have an impact then on the things that they’re able to do. It can spiral and become a vicious circle where people can become very low, very down, very anxious, very worried and frustrated about their pain.

We know that those types of emotional responses are very natural and normal. But we know that they can enhance the amount of pain the person faces; it can make the pain worse. I think when I started in the field of pain about 10 or 12 years ago, I would have thought, ‘well, it’s that the person thinks that the pain is worse.’ But the newest research would show that the pain actually is worse, and that the part of the brain that processes pain – when people are feeling very frustrated, when people are feeling very angry, when people are feeling very low – that the pain is actually really worse, genuinely worse.

I suppose, as you were talking as well, Sam, I was conscious of you saying that this particular lady has a fear of activity and that her activity at home is quite limited in that when her partner and when her children are away from home during the day, she’s on her own. She’s spending quite a lot of time not really being particularly active. And again, that’s very, very common. We would see that in a lot of people who present to our clinic would be very fearful of activity.

The difficulty is that people can then become very inactive, and then that can, I suppose, exacerbate any pain problems that’s there. And also if she is inactive, then she’s maybe not going out socially, which will have an impact on her depression.

So, for so many people, it can become like a vicious circle. I think that in this particular lady’s case, I would say probably a role for myself in terms of the management of her depression would also maybe help her to overcome some of those fears and whatever social fears are there, as well, which are maybe helping maintain her difficulties at the moment.

McConaghy: Thank you very much, Nicola. One of the other things, Sam, which you mentioned was that this lady is not very active, and Dr Sherlock mentioned about having a fear of it worsening her back pain. I’d like to ask Michele McGeown, who’s a pain physiotherapist: :f this lady’s already been to physiotherapy, is there any point in her being seen by a specialist in pain physiotherapy again?

Michele McGeown: Absolutely. I think it’d be really worthwhile for her to attend physiotherapy again. I think the core thing that came out with me was the MRI scan and her understanding of the bulging discs, which suggests to me – even from the information that you’ve told me – that this may be playing on her mind whenever she’s not moving. Is she afraid of the movement because of the bulging discs? Is she afraid that, regardless of what movement she does in any particular direction, this will make her pain worse?

So a core approach that I would use with her would be, first of all, understanding, giving her the education of how chronic pain persists and what drives that chronic pain. Then that would be one of the core aspects for her to understand, even to normalise the disc bulges, which would hopefully impact on her fear and get her moving better. Even within physiotherapy, we have one-to-one treatment for those who maybe need specific exercises and will manage with a treatment approach tailored to them.

But, also, one of the services that we offer is the pain management program – so that’s the disciplines of physiotherapy, psychology, and nursing combined. The way we work at the minute in the Southern Trust is that we offer a pain education class, where all patients who are interested in attending combined therapies meet and are given information about their pain.

After this session, some people are happy to manage independently just with the advice and education about self-management. Others, then, will go on to our multidisciplinary pain management program, and some, then, will undertake the pain plan, which is an approach where they’re given a booklet, or a work booklet, that they work through under the guidance of one of the health professionals – a psychologist maybe seeing them once a month for three months. It goes through all the information to help them manage their pain.

So, the big thing with this lady we’d be working on is getting her more confident to move by education, by lowering all her worries and her fears in relation to movement, which hopefully will interact on her depression. And we know that for mild to moderate depression, one of the three things that is offered and is recommended by the NICE guidelines, along with medication and psychotherapy that Nicola’s already mentioned, is exercise, and how important it is for her to exercise. If we decrease her fears of exercise, and encourage her independent exercise, that hopefully will impact on her depression as well as her pain.

McConaghy: Can I just ask, Michele, are there any exercises that you think this lady would not be able to do because of the MRI results?

McGeown: Absolutely not. I think the idea is giving her an exercise that suits her and giving her the confidence to exercise. So there’s no reason at all that she can’t. It’s just finding what suits her and suits her best. But again, it’s dismissing those fears and maybe information that she’s been told in the past where she’s been anxious.

McConaghy: It sounds as if it would be very useful for this lady to attend your combined clinic…

McGeown: Absolutely.

McConaghy: …which I know you run, which has certainly been very productive for this team and for the patients in this area.

Evans: If I were one of Michele’s patients, Michele being the physiotherapist, and she was having problems with me, or I was not exercising and having trouble with that – ‘No, I can’t exercise ‘cause it gives me pain,’ you know, ‘I cannot do it’ – how would you help her help me?

Sherlock: I think that one of the best ways of kind of conceptualising that worrying and thinking about it is to think about it nearly in terms of an anxiety or a phobia. Most of us will be familiar with what a phobia is, so it’s like an intense fear: people could have a phobia of spiders or snakes. Most of us are familiar with that. But I think that with a lot of patients, they can have a really significant fear about activity and physical exercise, and making their pain worse.

So the way that we would treat that kind of thing is to begin a graded exposure. To use the analogy with the snake, if you were very, very fearful of snakes, and if you felt that you needed to overcome that – hopefully you wouldn’t because hopefully you don’t encounter too many snakes in your life – but if that was a significant problem for you, what we would begin to do is maybe initially start by talking about snakes and you would learn to tolerate and cope with that anxiety. Then we’d maybe show you pictures of snakes, then maybe have you close to a box containing a snake and, so forth, until eventually you are holding a snake.

And really, it’s the same analogy that we would use in terms of management of fears of exercise, so it’s very, very slow, very gentle introduction to exercise so that people see that their greatest fears don’t come to pass.

I think all of us avoid what we’re fearful of. It’s human nature. We avoid what we’re fearful of. Really, the only way of overcoming those fears are by actually doing it. So I could say to you, ‘don’t worry, that snake won’t harm you.’ But you’re not going to believe me because that’s so deep-rooted with you. But the only way that you really come to see that for yourself is by gradually doing it. So it’s not about me throwing a snake at you, it’s by moving gradually through a process of exposure to that fear. And it’s the same with activity.

So for Michele to go in and say, ‘absolutely ridiculous. You’re absolutely fine, just go out and do the activity’ – that doesn’t work because those fears are so deep-rooted. So it’s about gradual, graded exposure and building people’s confidence. So myself and Michele, the physiotherapist, would liaise quite closely in doing that work.

McGeown: We have an idea of the impact of the pain’s physiology, but what I really, really learnt from psychology over the years is really getting down to how it really impacts on their depression, how it impacts on their mood, their feeling of self-worth. Having the empathy for the patient, telling the patient that you understand, is half of the battle. Giving them the confidence that you can help them manage their pain, it’s giving the respect to the patient. But at the same time, knowing your boundaries, and knowing that as a physiotherapist, you can help them with their managing their pain. But what I’ve really learned from psychology is knowing when to signpost on, and saying, ‘okay, there’s maybe significant barriers here, that your depression is too high. You need to be signposted onwards.’

Evans: And that’s presumably where a team meeting like this comes in.

McGeown: Absolutely. It’s great that we meet once a month, and if there [are] any patients that we’re concerned about, that we can discuss them at a team meeting. Sometimes just talking it out loud and having the support from the other members of staff and getting their feedback really helps.

I think even the patient being able to say to them, ‘are you happy for us to discuss at a meeting?’ – they’re thinking: ‘This person really understands the impact this pain is having on me.’ Then again, you feed back to the patient that you’ve discussed them at the meeting and then the outcome. So it is – it’s great.

McConaghy: There’s one other thing for back pain that is sometimes used and that’s a TENS machine, which some people find useful. Sister McInerney, who’s a pain sister, runs her own TENS clinic and also makes changes to medications as well as giving a lot of cognitive behavioural advice. Bríd, would you be interested in having a look at this lady?

McInerney: Yes, I would be interested in seeing this lady and trying a TENS machine. TENS may well be of benefit. It’s a drug-free device and simple to use. I also would like to talk to her about self-management and stress the importance of self-management.

A TENS is a TENS machine: transcutaneous electrical nerve stimulator. It’s a battery-operated device which can relieve pain.

Evans: You see, I’ve got a TENS machine. They’re around the size of a packet of cigarettes, really.

McInerney: Yes.

Evans: There are four little dials on it, one with squares and one with triangles, if I remember rightly. I have no idea how to use it other than if it’s making me uncomfortable, then it’s doing something good. Is that right?

McInerney: Not particularly. [laughs] And often that is the case, you know. So it is very worthwhile to have it explained properly, because it is only when it is explained properly that the benefits are achieved.

Evans: I haven’t used mine for some time. I didn’t find it particularly effective. Perhaps that’s because I’m not using it correctly. But from memory, there are, like, paddles that you stick to yourself or electrodes that you stick to yourself.

McInerney: Correct.

Evans: And I guess the electricity pulse travels from paddle to paddle, and you get like a tingling effect across your shoulders… [McInerney: Yes.] or across wherever you’ve done it. And if you turn it up, it actually gets sharper and sharper and sharper, like pinpricks.

McInerney: Yeah, there are controls on the TENS machine. It’s very simple. Basically, there’s the on switch, the off switch, and you can increase the pulse width or the frequency, basically, which is increasing the intensity. The electrodes, the sticky pads, are placed over the appropriate area and this tingling is delivered to that area. There’s not every type of pain that we would suggest you use it for. It can work very well for muscular type pain or localized pain.

McConaghy: In relation to the two points that our GP mentioned, which I think we have to address specifically, namely the use of morphine and the place for injections, Dr Jacek Sobocinski is a consultant at the pain clinic who has a special interest in spinal injections. And I’d be very interested, Jacek, if you thought there was a place for injections in the management of this lady’s pain, from what you’ve heard.

Dr Jacek Sobocinski: Obviously injections certainly play a significant role in treatment of patients with pain conditions. But as we heard already from Nicola, Michele, and Bríd, that is so important to look at the patient not only as part of the body which suffers the pain but to see the patient as a whole person and manage the situation: before we even think about the injections we seek opinion from psychologists, physiotherapists, or TENS clinic.

As what I’ve learned over the last fifteen years, that injections however they’re really a strong and important tool in treating pain conditions, they work far better and they are more successful if there is a combined treatment with psychological approach, physio, and TENS treatment. Obviously, there is need for medication – yes, this is very important – but I would like to just highlight the importance, that injections, however they are available in pain clinic, they’re not the only tool, and they’re not the tool that all the time gives relief. This is very important, that I would like to pass this message on all the patients. Okay.

McConaghy: Thank you very much, Jacek. So injections may have a role, but we need to wait on an initial assessment by our colleagues first. That sounds reasonable.

The final point that was mentioned by the GP was the use of morphine, which is obviously a very strong pain killer. We’re delighted to have as part of our team Dr Jim McMullan, who is a GP with a special interest. Jim, do you believe that potent drugs like morphine have a place in this lady’s case?

Dr Jim McMullan: This lady, not to use too much jargon, seems to have a lot of yellow flags: lot of warning signs, that there could be mental health problems, she has signs that she’s got a depressive illness: she’s having poor sleep; she’s tired all the time; she’s having fear-avoidance; possibly some catastrophisation behaviour… all of which would make me very reluctant to move up to potent opioids.

She has been tried on co-codamol and tramadol, which are of the more weak opioid variety, with poor response. And certainly my gut feeling, without a proper bio-psychosocial assessment of this lady, would be to avoid strong opioids. I think we may be making this lady’s condition worse rather than better, and of course, the long term evidence for use of opioids in chronic, non-malignant pain is very weak, particularly over, I think, over a year and a half long.

[phone rings]

The thing I teach at Queens University at Belfast is communication skills, and I was always told that if you didn’t ask the right questions, you wouldn’t be told the right answers. And if you didn’t listen to those answers, you would certainly never pick up on the story. We still believe that 80% of the diagnosis would be made from the history. Examinations and scans are all very helpful, but the vast majority of our diagnoses will be made from a history taking; if you don’t take a good history, you’re not going to get it right.

So, communication skills, listening to the patients, believing the patients, listening to their ideas, their concerns, their expectations. Of course, in primary care, we’re much more used to dealing with the chronic disease model than perhaps some of our hospital colleagues, much more through the bio-psychosocial aspect of chronic pain rather than, “Oh, drug X didn’t work. Let’s try drug Y.” Let’s look at why drug X didn’t work; let’s see what’s going on at home; let’s find out how they’re coping financially; let’s see what their mental health’s like, find out how their children are keeping: the big picture. Not just another tablet.

Evans: Yes, but you do communication skills for health professionals.

McMullan: Yes.

Evans: What about communication skills for patients? How should I as a patient speak to you?

McMullan: I think every patient should speak to the doctor the way they feel most comfortable. I think it’s up to the physician to put the patient at their ease and we always talk about the golden use of silence. Ask a good question and sit back, say nothing, and see what happens. Sometimes you can be surprised: you’ll get a 20-minute answer; sometimes it could be a 20-second answer. But certainly, you should be silent and let the patient tell their story in their own words.

Evans: Many patients with chronic pain will feel sometimes let down by their GPs. They have their four-minute, their ten-minute consultation appointment. I’m thinking that the GP, doctor then says goodbye and the paper gets closed until the next appointment: “See me again in 10 days’ time,” whatever. It’s quite interesting to see a team working in here. What do you bring to that?

McMullan: Well, again, I say, we’re used to a chronic disease model in primary care. We’re used to teamwork. For example, if we use the simile of diabetes, like diabetes, the doctor, the GP can prescribe the correct drugs, but he’s going to need help from the podiatrist. He’s going to need help from the ophthalmologist, to make sure there’s no eye problem. He’s going to have the clinic talk, if it was a particularly difficult case, to a diabetic specialist or a diabetic specialist nurse. You may even have to, if their control is so poor, we may even have to refer them up to the hospital for their input as well, as regards [to] perhaps injections and insulin surveys.

But ultimately, the patient has to take their responsibility as well. There’s no point in me giving the best of treatment and the patient then going out and not sticking to the diet, lifestyle and exercise and completely ignoring what they’re told. So it’s time to get everybody on board and everybody involved.

And you’re absolutely right. In secondary care, I have half an hour for a new patient and 20 minutes for a review. In primary care, I have 10 minutes. It’s very hard to cover everything in one 10 minutes. The one thing I will say is this: as the patient’s GP, I may be far more aware of their social isolation or their financial situation and I certainly will be a lot more aware of their family history of problems and what’s going on, so I might be in a better position to make that comment and to find out whether this is a… somebody who requires more close follow up or someone who doesn’t.

Evans: We say during all these Airing Pain programmes that you should always consult your own GP or your own medical professional on any matter relating to your health. And that’s what you’re saying, isn’t it? You know them better than…

McMullan: Absolutely, we’re in a very privileged position. These might be people whom you have known from birth, or from preconception, right the way through to their adolescence to their marriage to their having children of their own. You’re in a very privileged position. And that’s an awful lot that’s not in their notes. A lot of that’s not on the computer screen. It’s in your head.

And again, I know one of my colleagues in secondary care will not prescribe an opioid without having a psychological assessment done and that’s because he quite honestly and rightly says, “I’ve only known this person for half an hour.”

In primary care, we would be much quicker to make that decision because we will know about their social situation, we will know if there [are] yellow flag issues in the house, if there is alcoholism, if there is addictive personality, if there is a gambling issue or if there’s something else going on. We will probably know that, and we don’t have the privilege of having a psychologist to refer to for that assessment. We go on our own gut instinct and our experience from knowing the patients so well.

McMonaghy: So we’ve arranged this lady to be seen at the combined clinic of Dr Sherlock and Michele McGeown at the physio and psychology. We’ll arrange for Sister McInerny to see her at her TENS clinic. Then we’ll discuss her at our next meeting and decide if there’s been any progress and, very importantly, of course, what this lady has agreed to in terms of future treatments.

Evans: You’ve just discussed the case of a patient who, I have to say, is not a real patient but a typical patient.

McConaghy: That would be a fairly typical patient with a pain problem, but around that, there are other psychological and social issues, and the whole thing is ingrained. They’re all interlinked and trying to disentangle it does involve a team approach, as you have heard.

Evans: Dr Sam Dawson presented this patient to you, hopefully that the team could sort out a plan, really, for the patient. What happens next?

McConaghy: The next thing would be to offer the patient some appointments. Initially, she would be seen at a… be offered an appointment at our combined clinic between our psychologist and our physiotherapist. Now this can come as quite a surprise to patients because they’ve come with a physical problem, yet they’re being asked to see a psychologist. Patients quite often wander: “Does this doctor not believe me? Do they think I’m mad?”

Now, if I had seen this patient individually, I would normally explain my reasons for this. Indeed, it’s because I believe that the patient has genuine pain and is not mad that I’m asking our clinical psychologist. If I thought she did have a psychiatric issue or wasn’t in significant pain, I would not involve our psychologist.

Soon after that or around the same time, she would see Sister McInerney, and Sister McInerney has got many years of experience in chronic pain, not only in dealing with the physical problems, but in talking to people and working out exactly what is going on. There may be other issues in relation to this lady’s case, marital issues, for example, stress at home, financial issues, if she can’t work. And all of those will have to be brought to the surface. We won’t have the cures for any of those, but we will have advice. And if the patient is open, then the outcome can be surprisingly good.

Now, when this patient’s been seen by my three colleagues, we will re-present her at the meeting and we will have an update. If she has responded well, I suspect strongly that my colleague, Dr Sherlock in clinical psychology, will want to see this lady reasonably frequently over the course of three or four months, and will perhaps suggest to the group that she’s allowed to treat this lady for that time before re-presenting her. At the end of that, she will give us an update on how this lady’s doing, and that will include issues around her quality of life, depression, activities, social phobias, as well as her pain.

She will then offer the group the chance to contribute, or whether one of the doctors would like to see her, perhaps to change the medication or to consider an injection. At that point, we’d be very keen to do that. Our physiotherapist Michele would then be in a position to tell us what her function is like and, as a specialist in the management of chronic pain, Michele has particular expertise and has been able to help the doctors on the role of injections. She’ll quite often come back to us and say that a particular injection would be beneficial, and it would not be unusual for us to book the patient for the procedure after sending them a letter to let them know without actually seeing the patient and seeing them for the first day because we have that much faith in our physiotherapy colleagues who have had training in the management of chronic pain.

We’re delighted to be able to offer almost all injections that are available for chronic pain, whether it’s simple joint injections through to implanting spinal cord stimulators. But we’re careful about [to] whom we do that, and injections are part of a treatment plan. For some people, they are a big part of it; for some people, they are just a minor part. But we consider all of the options in all of the patients.

Evans: My thanks to Dr Paul McConaghy and his team at Craigavon Area Hospital in Northern Ireland for that fascinating insight into the workings of a multidisciplinary pain team.

Now don’t forget that you can still download all the previous editions of Airing Pain, or you can 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 programs, 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.

Contributors:

Dr Nicola Sherlock, Clinical Psychologist with an interest in Pain Management
Dr Sam Dawson, Registrar
Dr Paul McConaghy, Consultant in Anaesthesia & Pain Management
Mrs Michele McGeown, Specialist Pain Physiotherapist
Sister Bríd McInerney, Pain Sister
Dr Jacek Sobocinski, Consultant in Pain Management & Anaesthesia
Dr Jim McMullan, GP and lecturer at Queens University.

Additional Information:

Red flags – clinical indicators of possible serious underlying conditions requiring further medical intervention. Red flags were designed for use in acute low back pain, but the same principle can be applied more broadly in the search for serious underlying health problems in assessing a patient with any kind of pain.
Yellow flags – psychosocial indicators suggesting increased risk of progression to long-term distress, disability, and pain. Like red flags, yellow flags were designed for use in acute low back pain but can also be applied more broadly to assess the likelihood of the development of persistent problems in patients with any kind of pain.

A look at how experts from different backgrounds work together in multidisciplinary pain teams

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

Presenter Paul Evans travels to Northern Ireland to meet a multidisciplinary pain team at Craigavon Area Hopsital, including doctors, psychologists and physiotherapists, led by Dr Paul McConaghy. We find out how cases of chronic pain are discussed by experts of different disciplines and how management strategies are then put into place. The importance of educating GPs about chronic pain is discussed, as well as the need for empathic and respectful professionals.

Paul Evans sees how the team works by sitting in on a meeting about an example patient: Dr Sam Dawson presents the case of a 38 year old woman with chronic lower back pain. Referred by her GP, treatment so far has not led to improvement and she is now experiencing depression.

The team discuss the strategies they would use in working together with such a patient. Psychologist Dr Nicola Sherlock stresses the importance of treating depression as it not only hinders the management of a person’s pain but worsens the symptoms and she and physiotherapist Michele McGeown explain the importance of dealing with pyschological issues, particularly fear of movement, in helping patients improve their physical fitness. The team also talk about how they could use TENS (transcutaneous electrical nerve stimulation) machines to help some patients and how medical doctors and psychologists can work together to understand how a patient is likely to respond to injections. Finally, Dr Jim McMullan explains how GPs can learn from and complement the multidisciplinary approach by listening carefully to the patient and taking into account psychological and social as well as physical aspects of their condition.

Glossary:

Red flag: Red flags are clinical indicators of possible serious underlying conditions requiring further medical intervention. Red flags were designed for use in acute low back pain, but the same principle can be applied more broadly in the search for serious underlying health problems in assessing a patient with any kind of acute pain.
Yellow flag: Yellow flags are psychosocial indicators suggesting increased risk of progression to long-term distress, disability and pain. Like Red Flags, yellow flags were designed for use in acute low back pain but can also be applied more broadly to assess the likelihood of the development of persistent problems in patients with any kind of acute pain.

Contributors:

Dr Nicola Sherlock, Clinical Psycholologist with an interest in Pain Management
Dr Sam Dawson, Registrar
Dr Paul McConaghy, Consultant in Anaesthesia & Pain Management
Mrs Michele McGeown, Specialist Pain Physiotherapist
Sister Bríd McInerney, Pain Sister
Dr Jacek Sobocinski, Consultant in Pain Management & Anaesthesia
Dr Jim McMullan, GP and lecturer at Queens University.

The pain management needs of children and young people and the impact of their pain on family life

To listen to this programme, please click here.

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This programme focuses on pain in children and young people, including the different needs they have and the unique challenges that their care presents compared to adult patients. Paul Evans and Christine Johnston talk to experts at children’s hospitals in Edinburgh and Glasgow about the strategies they use for helping young people to cope with pain.

Although there are obvious differences between treating an infant and a teenager, the aim is always to enable young people in pain to live the fullest lives they can, while minimising the effects on their education and socialisation. We also consider the wider impact of a young person in pain upon the family unit and we hear from Sam Mason about how chronic pain has impacted his life at home and at school.

Issues covered in this programme include: Children, young people, family, parents, school, hormonal imbalance, psychology, physiotherapy, psychosocial development, communicating pain, TENS, ENM, musculoskeletal pain, acupuncture, breathing exercises and peer support.

Paul Evans: Hello. I’m Paul Evans and welcome to Airing Pain, a programme brought to you by Pain Concern, a UK Charity providing information and support for those of us who live with pain. This edition is made possible by Pain Concern, supporters and friends. More information on fundraising efforts is available on our JustGiving page.

Jean Eadie: If you have a sick child, I think the parents have to come to terms with it, because they’re living with it constantly – they’re usually distressed quite a lot of the time.

Pamela Cupples: Parents by definition want to make their children feel better and feel powerless to a certain extent with chronic pain because the paracetamol or the non-steroidals [non-steroidal anti-inflammatory drugs] that they’ve been given which should take the pain away don’t, so they feel helpless. Unfortunately there’s lots of kids out there who have chronic pain whose families are going through this on a day-to-day basis.

Evans: For those families who are going through this on a day-to-day basis – this edition of Airing Pain will visit two hospitals in Scotland that treat sick children. First, I went to the Royal Hospital for Sick Children in York Hill, Glasgow, where I met Consultant Physiotherapy Manager: Jean Eadie and Anaesthetic Consultant: Pamela Cupples. And she (Cupples) explains the difference between treating adults and treating children.

Cupples: I think there’s a lot of overlaps but the big difference is that emotionally you’re dealing with children who are ranging from the very young to the adolescents and it becomes a package: they’re coming not only as themselves but they’re bringing their parents. And, understandably, if this condition has been going on for a long time the parents are very anxious and concerned about this child – that they’re unable to help manage their pain – and you mustn’t forget that there maybe will be siblings who are also affected by this. So it’s not only the child but the family that are affected by the condition they are presenting with.

Evans: So the impact is on the whole family unit?

Cupples: Without a doubt.

Evans: A 4-year-old child will have a 7-year-old brother.

Cupples: Without a doubt, and with a lot of focus being on the 4-year-old child, you have to remember that there’s the siblings – whether they are younger or older – who will undoubtedly be affected by the sibling with the chronic pain.

Evans: Jean, at what point do you see the children? You’re a physiotherapist, physiotherapy for children can’t be the same as physiotherapy for adults, can it?

Eadie: No it’s an absolutely, totally different, a totally different approach altogether: as Pam says you’re really treating the whole family. You have to get trust from the child, you have to really [get them to] have faith in you, believe them that they’ve got pain, because sometimes, by the time we get the children, they’ve been all round, all over the place, been sent from here to there and nobody is giving them any answers. So the first thing that I would do is reassure them – we know you’ve got pain, we’re here to help and it’ll take time – we have to explain it all to them. Now some of the children, I tend not to see the younger ones – they have different issues. Probably the most we see are the adolescents or from 10 to 14 and it’s mainly girls, so for whatever reason it is – there’s sometimes something else going on – which because we work as a team with psychology, psychiatry and the anaesthetic team, it’s very important that we’re all saying the same things to these children and gaining their trust.

Evans: Do you know why it’s mainly girls?

Eadie: There have been questions asked about hormone imbalance or this transition from primary into secondary school that is the most common with girls now. They haven’t looked into it in great depth but it’s always at the back of our minds. Sometimes perhaps it might be the girls aren’t coming up to expectations with some of their peers – who knows? But sometimes there are issues like that or there may be issues at home. I don’t know if you agree with me Pam – what do you think?

Cupples: Without doubt! It’s a very difficult time period, that transition into puberty or about to enter into puberty, and difficult things may be happening with the child. They may have had an injury, but there may be things going on in school or within the family, and it manifests itself in a different way and they can present at a chronic pain clinic. And as Jean said, it’s very important that we have a multidisciplinary approach and we value all the input that we get from all the disciplines – physiotherapy, psychology and psychiatry – and it is a group effort.

But the most important thing is reassuring them that they are not alone and there are lots of other kids out there who are experiencing the same problems and the same pain, and that we believe them and that we are going to try and help them and certainly get them on the path to recovery. And if in an ideal world we get rid of their pain, but if we can’t get rid of their pain we give them techniques to cope with their pain better and allow them to get back into normal life, stabilise life and start socialising, getting back to school – all the things that kids of that age would normally be doing.

Evans: Pamela Cupples and Jean Eadie at the Royal Hospital for Sick Children in York Hill, Glasgow.

Fifty miles to the east is the Children’s Hospital in Edinburgh where Consultant Anaesthetist Mary Rose runs the chronic pain clinic for children.

Mary Rose: I’ll be seeing children from the age of five upwards with chronic pain. And it’s the time of their lives when these children should be receiving schooling, should be really developing social relationships and things. So if they have chronic pain that can have huge impacts on their schooling and their psychosocial development which could really impact on into adulthood. So this is a really crucial time to try to improve their function if they have chronic pain and it’s affecting their function. The overall treatment approach is still multidisciplinary and a bio-psycho-social model that we use for treating children, but just an age-appropriate model.

Evans: What do you mean by bio-psycho-social?

Rose: The children that we see – I always feel that their pain will have a biological cause but there will also be psychological and social factors that will be impacting on their pain as well. And it’s also a two-way model – I think the pain itself will cause biological problems and can cause psychological and social problems for the children so it’s very much a two-way process.

Evans: Now I’m not saying that children are more special than adults, but some of the social problems you’ve just mentioned – the education, learning to live with other people – all the learning processes through life as a child. These cannot be missed, can they?

Rose: That’s right, so it’s really a one-off opportunity, I think, for these children to develop these social relationships and to acquire their education that’s going to affect them all the way through adulthood. I think that’s why it is so important to manage these children and improve their function. We say to them we can’t always… we don’t expect to get their pain scores down to a zero, but we do very much focus on improving their function.

Evans: Having a child in pain can be one of the most upsetting things for a parent. How do they deal with it?

Rose: As you say it’s very distressing to see a child in pain and some of the families, they can be angry. They can feel very frustrated that nobody’s doing it and on a practical side of things a child may not sleep if they’re in pain. And so their child will be going to sleep with the parents and nobody in the house is getting to sleep, and the parent will end up not being able to get to work because they’re tired or they’re having to stay at home to look after the child. And so it has a massive impact on them.

Evans: And I suppose you could lose confidence as a parent: ‘Do I rush my child into A&E or do I just stay home? Do I have the confidence that they’re OK?’ What advice would you give to parents?

Rose: Yeah, it is hard for the parents. I think we would start off by giving them an explanation of why the child has the pain and then give them advice on how they should manage the child which will often include, yes, acknowledging that the child is in pain, but then trying to move on and perhaps distracting the child and trying to carry on with life rather than everything going on hold because the child has pain.

Evans: How do you talk to children or adolescents about pain? Because as an adult I might be able to communicate with you much better about what I’m feeling, how I’m hurting, how it’s impacting on me, but a child might not be able to communicate the same way.

Cupples: I agree – it’s very difficult for very young children to put into words what pain feels like. When we get a referral to the chronic pain clinic we actually send them out our pain questionnaire which gives us a lot of background information about who they are, who’s in the family group – so brothers, sisters, mums and dads. And then there’s a page where there’re a lot of words that we would use to describe pain varying from throbbing, stabbing, aching and they have to circle the words that best describe their pain and they then have to choose three words that they can whittle down to being the words that describe their pain best. That’s a very useful tool for us because it allows us to try and get that description of pain which is much easier in adults, but very difficult in children.

Evans: Do children understand everything you’re talking about?

Cupples: I’m sure they don’t, but I think we’re very aware that you’re dealing with an age range of children, and you have to be age-appropriate, and so the terminology that you use for a 14 year old is very different to the terminology that you would use for a 6 or 7 year old. So you try and use words that they understand and it is important that they do understand what you’re talking about. Obviously the dialogue you have with the parents is very different, but it’s important that the child understands why they’re there, what you’re trying to do for them and gets a sense of ownership.

Evans: Give me an example – how would your language change talking to a 5 year old as opposed to talking to a 55 year old?

Eadie: It would be different for me in that the treatment, or whatever I was doing with them, would be more play. Just playing with toys, watching them, observing them, seeing what they’re doing and just talking to them as you would to any child – about what they’ve been doing, what they like and ‘What did you have for your tea?’ and just normal chit chat. So you wouldn’t be asking them adult things about anything; it’s just more play and just normal things you would talk to a child about.

When you get to teenage things, its more on a social level about what they like to do again but in different ways. But it’s just a wide spectrum of stuff that you do discuss with children. And you have to see what responses you’re getting from the child because if they don’t want to talk to you then they won’t and if they’re in a huff, fine – but you can’t keep push, push, pushing them. They’re in a very strange situation and in hospital with a lot of strange people asking them questions, to take their clothes off and all the rest of it, you know, so you have to be quite sensitive to their feelings and their needs as well. And if the responses you get from a child are just horrendous then you may as well just stop – go away and come back another day.

Evans: Do you find that teenagers are difficult to work with?

Eadie: I think they either love their physio or they hate them and to be honest there’s not much of a happy medium there. And it is very difficult because sometimes you have to say to them ‘Now look, it’s going to be a bit uncomfortable’. We try to relieve the pain obviously but we have to explain that it will be uncomfortable and a bit painful, but that’s the way you’re going to get better, and in the main they come round. But you do get the occasional one that’s quite difficult so… but there haven’t been many failures.

Evans: So at the end of the day when you finish the course of treatment, what is your ideal outcome?

Eadie: That they just go back to normal life. I mean, that’s the bottom line.

Consultant Physiotherapy Manager, Jean Eadie at the Royal Hospital for Sick Children in Glasgow.

Evans: Sam Mason suffered a burst appendix when he was eight. It left him with chronic pain for which he’s been attending the Chronic Pain Clinic for Children in Edinburgh for the last 5 years. Christine Johnson went to meet him and his mum, Lynn. She started by asking him whether it was difficult to describe his pain to the doctors.

Samuel Mason: Well at the beginning it was but eventually we developed a way of saying whether it was sharp pains or achy pains, and a scale that we used from 1 to 10 and smiley faces. When you have a cough or something and it’s just a little tickle in your throat and it starts to hurt a little bit, that’s kind of the 1, and it goes through a scale. Five is when you’re starting to feel upset and 10 is when you’re crying in agony. The majority of the time it’s a 7 or 8. I heard a little girl in the next bed to me when we were in the ward. She said ‘I feel it’s a 10’ but she was actually a 4 and the thing was… it’s a good thing, but I think sometimes kids can get confused with it. I heard [this] from just sitting in the bed and hearing things and just wondered why that was. The next day a play nurse came and explained to them what the system was and how it worked and I think that if all the kids had that, it would give them a much better understanding. Because then I noticed a boy over from me, who wasn’t feeling that well either, and he had the system explained to him and then they could actually deal with it in the right way, I think, because he felt better after a couple of days. And I just thought it was good that they had that.

Lynn Mason: The other thing was that Samuel looked quite well and he didn’t think people believed him, and sometimes I would think ‘Oh come on, it can’t be that bad!’ so it’s very difficult. I think the more you live with it, you actually see the effects – the knock-on effect – it has on his life and you realise that a lot of it can be psychological too with the pain. He couldn’t do a lot of things that he would have been able to before. So I think as a family it has a big impact on everyone – you know – and on what we used to do at weekends, depending on how Samuel was feeling.

Samuel: I think it had a big knock-on effect on my sister, though, because she normally had a fun brother that would always do things with her, so she was quite upset a lot of the time if I had to spend – say when I came home from school – a day in my bed, just until after teatime, until I could actually do something at all.

Christine Johnson: So is she older or younger than you?

Samuel: She’s younger than me – she turned 10 in June – so it was really hard for her because when I first started she was about 7. So she was at that kind of age where she always wanted to play and never wanted to rest, so it was always hard for me to actually say no. Cause I wanted to, but I knew if I did I wouldn’t be able to do anything the next day. You know these kind of rip apart Barbie dolls that you have? I think at one point it got so hard to tell her what was wrong that I would show her here what pain I felt and use a red marker pen to show her how bad the pain was, and she would ask me how bad it was and we would have a colour scheme and stuff like that.

Evans: Sam Mason. Whilst many of the same drugs are used to treat children as adults with chronic pain – of course in an age and weight appropriate way – Consultant Anaesthetist Mary Rose points out that the use of medication is just one part of the treatment.

Rose : In addition to medication, we’ll also use TENS (transcutaneous electrical nerve stimulation) machines and ENM (electrical nerve model) machines and use acupuncture as well – which surprises some people [laughs] that the children will accept it. But the majority of children – again, once we’ve discussed it with them, shown them the acupuncture needles – are happy to undergo the treatment.

Evans: Do they respond well to it?

Rose: Some children do, yes. I tend to use it for children with headaches or children with muscular-skeletal back pain – it can be quite effective there. When they have acupuncture one of our specialist nurses does the treatments and she’ll certainly initially do a weekly course for 6 weeks. And I think the children enjoy very much meeting with Mandy every week as well [laughs] which is one of the reasons why it helps.

Evans: Meeting with Mandy who is going to stick needles in your back.

Rose: [Laughs] Mandy is a very warm friendly person who gets on very well with the children and so they enjoy coming [laughs] to chat with her.

So Christine Johnson’s off to see Mandy – that’s Mandy Sim, one of the pain nurse specialists at the Sick Children’s Hospital in Edinburgh – and she’s been treating Sam with acupuncture.

Mandy Sim: Our normal sessions would be a course of six appointments, where I would see them every week for 6 weeks. Usually you’ll start getting effect on about the second or the third treatment and ideally what we’re looking for is that the effect is sustained longer after each appointment. So then, hopefully, by the time we get to session six they’ve got a good sustained effect from their acupuncture and then we’ll bring them back for top-up appointments as and when required thereafter. The first appointment, I might only stick in one or two needles, depending on what the child is able to cope with, and then building up from there. Obviously where the needles go in depends on where the child has got pain. Needles are usually left in for approximately 20 minutes.

Samuel: When you put the needle in sometimes you can feel a lot of what is called ‘Chi’ – the bad energy that comes out – and so you can feel the flaring and the redness that becomes itchy. When I had a lot of pain that would happen all the time, but now it’s just like a reliever from any extra pain that you’ve had on for the past 2–3 weeks.

Johnson: How long from when you started the treatment do you think it was until you started to feel a bit better, that you could feel it working?

Samuel: Personally, I think it took three sessions at least to get an effect of it because it took a while to build up – you know – having no pain. I think the first time I thought ‘This is just sore, why are you doing this to me?’ [Laughs] So it did take a while to get me into the way of thinking that it is going to help.

Sim: With chronic pain for children, and probably for adults as well, a lot of the time we’re not looking at high pain scores or getting somebody down to having no pain because that’s just not practical. What we try to look at is level of function – are they getting to sleep? Are they getting into school? Are they able to socialise with their friends and do normal things for their age group and normal family things? So that’s what our aims are within the Chronic Pain Clinic: to give the child their life back.

Lynn: The first time he had it he got in the car and instantly started yawning and was very tired. Mandy had said he would be very thirsty so we had juice and he finished it all and we had to stop and get more, so he was very thirsty. [We] got him home that night [and he] managed to get to sleep quite quickly, which he hadn’t been able to do. I checked on him and he hadn’t moved at all in the bed and so he got a really good sleep. That was the first time having done it and so after that I was very keen for him to carry on because it was obviously quite – not that he maybe felt it from the pain – but from the general problems with his sleeping and getting to sleep at night, it worked quite instantly. And he never moved – he’s a real mover in the bed, you can hear him – and he didn’t move. I went up in the morning to wake him for school and he was in exactly the same position – which he’s not on other days when he’s not had the acupuncture – so it was very interesting from that point of view. And he woke up a much better colour in the morning because he’d got to sleep earlier, but also it had obviously done something to whatever was going on in his body as well.

Samuel: So I think that’s what it was – 3 weeks it took – because after 3 weeks I actually realised ‘Wow! I’ve had a really good sleep, I can do more’. So I started to build up my normal schedule – I would get back into doing a lot more because of that function.

Sim: There’s a lot of children who have had chronic back pain in the past and they are now able to start going back to dancing classes that they‘ve maybe done before, participate in sport that they’ve not been able to do for a while. We’ve had some teenage girls who were able to go and get themselves a part-time Saturday job. As a teenager, you don’t want to be different from your peer group and you don’t want to be taking medication where it’s obvious at school that you’re going down to the sick room at lunchtime to take medication. So if it’s something that’s not making you stand out from your peer group it’s really useful.

Samuel: The biggest difference I noticed is that when I have PE [physical education] at school, I’m not having pain in my back – it’s mainly my back that I get the pain in and that’s where we normally do most of the acupuncture – and it’s just been much easier to do the PE instead of having to say ‘Can I not do this one because of the pain in my back?’ And I can also come home and then do something else and not just have to come home and rest because of the pain I’ve had to deal with all day.

I think I’d like to say one more thing though – it’s about primary school, just in general – because when I went back it was really hard to get back into doing anything and there was a lot of challenges I felt I had to overcome which was actually – get past everyone asking me how I was every single day. When I couldn’t sit down on a proper chair and I had to have a cushion or something, people weren’t happy with that. And so it caused riots in the class, because they weren’t happy with me being the only one with a cushion on the chair, and so they would fight over who would get the spare cushion that was in the classroom. So they’d have this fight and I felt like it was my fault but [I thought] ‘I can’t help that because I have to do this otherwise I can’t sit down’. And then there were a few teachers that weren’t really …

Lynn: But Mandy sorted them out.

Samuel: When Mandy came in and had a little talk – she did a little presentation – she did it in a way that no one knew that I knew Mandy. And so when she was talking about this pain machine that I had – the one that vibrates – a lot of people pointed out that I’d had that and that kind of made them more interested, rather than jealous that I had all these special things. They were more interested when they realised how much pain I was actually in – I think that kind of helped them all to realise. It gave me my life back in a sense because I could do everything with my friends.

Lynn: We’d be lost without it, wouldn’t we? Acupuncture’s been a good thing – as a parent you don’t feel like ‘I’m putting more drugs into my child’. Which do help to a certain degree but it is good to have something that is drug free and that Samuel can get some instant relief and get a good sleep from.

Johnson: Are there any other therapies you found particularly useful?

Samuel: Well there was one that we got introduced to because I was having trouble getting to sleep in particular. It was a psychologist that gave me techniques like breathing in and out and you imagine that you’re filling a balloon and eventually the balloon would burst and that would be you relaxed. And she was also very helpful because she would help my mum as she would tend to have – no offence – crying fits [laughs] because the pain got stressful at times. It was really Katie that helped us – she always used to have tissues in the room because it would help [laughs]. Eventually when she got her calmed down, she could give everyone else techniques to calm [them] down as well.

Katie was very helpful as well because at the time I was in a Star Trek phase and so we made up our own technique: when you’re calming down you were the commander of the bridge and you would go and say ‘We’ve got to drop off the cargo’ and your cargo would be your stress and everything that would build up. And the pain would go and then you could put the ship into light speed and go to sleep.

I went to a group once and there was a group of people – there was one that was 18 and one that was 16, me when I was 11, another that was 14 and another 17 year old. It was a workshop and it was someone that would teach you a wider variety of techniques. We made a happy box and you would put things that would make you happy in there, and so we put in all the techniques that Katie had given us because she had given us a big folder so we would never forget them, and we could read over how to keep yourself calm. I put a few other things in, like my pictures of happy times with my family and everything, and some things that we would want to get back to. I used to always have a bar of chocolate in there so, when I was feeling a bit down, I could have some chocolate and read over these things and it would make you happier. We also made a pillow that you had all your happy things on and I put some lavender scent on it so it calmed me down before going to bed as well.

Johnson: Was it helpful doing it as a group and meeting other people and seeing how they cope?

Samuel: Yeah, it was actually. The 18-year-old boy was saying that a lot of the time he just feels like crying, but he could never really cry and his eyes would just water up. And he found that very hard as a teenager because he liked to play music and you know music is… you’re supposed to be…I wouldn’t say ‘a tough man’, but a lot of the time, with the pain he felt, he couldn’t cry because his family would then think other things and he wouldn’t be happy with that. But this workshop taught him to just be comfortable and be himself, and if he had pain to talk to his family about it. After a couple of these sessions he came back and you noticed a real difference, with his dad especially. His dad has been struggling to cope with it – you know, macho man he said his dad was – and he was struggling to cope with the fact that his son wanted to cry because he was in so much pain. By the time he left he was so much happier and wasn’t all doom and gloom.

Sam Mason with a refreshing lack of doom and gloom – just what the doctor ordered. Now every week I issue these 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. But what should parents do if they are convinced that their child is in pain, but feel like they are being ignored? Mary Rose again.

Rose: That’s a difficult situation, the way the health service is set up in the UK, it’s very much a case that you must go through your GP [general practitioner] and be referred to a consultant. I think they would just have to be persistent and be a nuisance to the health services – not necessarily asking for more investigations, but the child has a right to have pain management.

Evans: But they need to be confident, well I use the word pushy, you use the word persistent, it might be different, but they have to stick by their guns.

Rose: Absolutely, yes. If it were my child of course I would be persistent and yes, you may be perceived as being pushy or difficult, but you have to do what you feel is best for your child.

Evans: But keep at it.

Rose: And keep at it, yes. And there are contacts such as the British Pain Society. If you feel your child has a chronic pain syndrome – you may have looked on the internet and feel your child has a complex regional pain syndrome or something – there are contacts with the British Pain Society who would be able to put you in contact with a pain specialist that you could then ask to be referred to.

Evans: But?

Cupples: If we had a magic bullet or a magic wand, we would use it in clinic. But we have to explain that many of the things that we’re doing in chronic pain take a long time to develop their effects – that it’s not like an adult has a headache, they take a paracetamol for it and 20 minutes later the head pain is gone. Chronic pain is very different and it can take a couple of weeks before you get a feel for whether the medication that you’ve started is going to be effective, or whether the TENS machine is going to be useful, or whether the acupuncture courses are going to be the solution to the problem. So it’s managing their expectations and making sure that you reassure them that you believe them, that you have lots of other specialists to help in the management of their pain and help them deal with the pain, and that over a period of time you will either hopefully get rid of the pain completely. And, as Jean said quite rightly, our ultimate goal is a pain-free child who is back to school and not missing chunks of school, which we see quite often in chronic pain, and who is socialising normally and developing normally. [Or] sometimes we don’t get rid of the pain completely, but if we are able to get that child back to school and functioning normally and give them techniques where they are able to cope with their pain better, then that is still a kind of win in our book.

Evans: That was Pamela Cupples, Anaesthetic Consultant at the Royal Hospital for Sick Children in York Hill, Glasgow. Now don’t forget that you can still download all the previous editions of Airing Pain from painconcern.org.uk and you can obtain CD copies direct from Pain Concern. If you would like to put a question to our panel of experts or just make a comment about these programmes then please do so via our blog, message board, email, Facebook, Twitter and of course pen and paper. The contact details are at the Pain Concern website – once again that’s painconcern.org.uk. The final encouraging word to Consultant Anaesthetist Mary Rose who runs the Chronic Pain Clinic at the Children’s Hospital in Edinburgh.

Rose: Children have remarkable powers of recovery and I’m optimistic that if we can manage them, that – even if we can’t completely get rid of their pain – they will be able to live with their pain and acquire their schooling and get out, get their social contacts. Also, another key message would be that the management of chronic pain, it is very multi-disciplinary, I think drugs are only one very small part and, although I am an anaesthetist and drugs is what I do best [laughs], I recognise that drugs are actually only a tiny part of getting children better. The psychology and physiotherapy – the physical approach is as well really important in getting children of chronic pain better.

Contributors:

Jean Eadie, Paediatric Physiotherapist, Royal Hospital for Sick Children, Yorkhill, Glasgow
Pamela Cupples, Consultant Anaesthetist, Royal Hospital for Sick Children, Yorkhill, Glasgow
Mary Rose, Consultant Anaesthetist, Pain Clinic, Royal Hospital for Sick Children, Edinburgh
Sam and Lynn Mason, patient and family member
Mandy Sim, Pain Management Nurse, Pain Clinic, Royal Hospital for Sick Children, Edinburgh.

The pain management needs of children and young people and the impact of their pain on family life

This programme was funded by Pain Concern’s supporters and friends.

This programme focuses on pain in children and young people, including the different needs they have and the unique challenges that their care presents compared to adult patients.

Paul Evans and Christine Johnston talk to experts at children’s hospitals in Edinburgh and Glasgow about the strategies they use for helping young people to cope with pain. Although there are obvious differences between treating an infant and a teenager, the aim is always to enable young people in pain to live the fullest lives they can, while minimising the effects on their education and socialisation.

We also consider the wider impact of a young person in pain upon the family unit and we hear from Sam Mason about how chronic pain has impacted his life at home and at school.

Contributors:

Jean Eadie, Paediatric Physiotherapist, Royal Hospital for Sick Children, Yorkhill, Glasgow
Pamela Cupples, Consultant Anaesthetist, Royal Hospital for Sick Children, Yorkhill, Glasgow
Mary Rose, Consultant Anaesthetist, Pain Clinic, Royal Hospital for Sick Children, Edinburgh
Sam and Lynn Mason, Patient and family member
Mandy Sim, Pain Management Nurse, Pain Clinic, Royal Hospital for Sick Children, Edinburgh.

The state of pain services in England and Wales: the National Pain Audit’s findings revealed

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At the launch of the National Pain Audit at the Science Museum in London, Paul Evans talks to people who took a leading role in its development about the need for an audit and what their findings suggest needs to be done in the future.

For the first time, the Audit will make available to patients and healthcare professionals detailed information on local pain management services. Richard Langford, Steven Ward and Cathy Price of the British Pain Society discuss the report’s findings, including the need for more pain clinics to adopt the minimum international standard for interdisciplinary services. This would enable them to take a biopsychosocial approach to pain management, which, as Richard Langford explains, can make a crucial difference to patients. Cathy Price also discusses how pain clinics could do more to help patients remain in or get back into employment.

We also hear from Christine Hughes and Jean Gaffin, who have both been involved in the campaign for better pain services, about the problem of inconsistent service provision and the need to work towards a national standard.

For more information on the National Pain Audit and to find out about your local pain services visit: www.nationalpainaudit.org

Issues covered in this programme include: Patient voice, patient liaison, epidemiology, study, pain services, the biopsychosocial model, multidisciplinary, mental health, pain as a condition in its own right, raising awareness, policy and GPs.

Paul Evans: Welcome to Airing Pain, a program 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 with an educational grant from Pfizer Ltd.

Each year over five million people in the United Kingdom develop chronic pain, but only two thirds will recover. Much more needs to be done to improve outcomes for patients. That was the stark announcement by the Chief Medical Officer for England in 2009. In response, the British Pain Society, in partnership with Dr Foster Intelligence Limited, and funding by the Health Care Quality Improvement Partnership, undertook a national audit of pain services. Their final report was published in December 2012. I went along to the launch of that report at the Science Museum in London.

Richard Langford: For those of you who that might not have met me yet, my name is Richard Langford, I’m President of The British Pain Society, and it’s a pleasure to welcome you to this event this evening, on behalf of really the three organisations that have been involved in delivering the National Pain Audit. So welcome and thank you so much for coming this evening.

It’s the final report which encompasses the work which took place in two phases: the first phase being an evaluation of an audit of the disposition of pain services around the countries, England and Wales; and the second phase was to recruit patients who were in clinics for the first time, enquiring about their history and co-morbidities and their incoming pain scores, quality of life, etc., and then following them up six months later to find out what treatments, broadly speaking, what treatments they’d had and broadly some of the outcomes.

Evans: Why did we need a National Pain Audit?

Langford: There was a reasonable amount of pain epidemiology in the press, suggesting the sort of range of percentages of the general population that suffer with daily pain or chronic pain. But we didn’t have a great deal of information on where pain services were placed and their composition in terms of staffing in order to deal with the pain problem which we recognised was quite significant, with an estimated 7-8 million people living with pain in the United Kingdom.

So we wanted to enquire about where the pain services were, what they looked like, and, also, there was very little information on how patients fared once they were referred to a pain clinic. So it was felt that all of that would be useful, and very particularly what triggered this national pain audit and indeed was the impetus to the approval for the funding was the fact it was suggested in the CMO’s annual report in 2008.

Evans: Chief Medical Officer?

Langford: Chief Medical Officer – yes.

I would like, personally, and on behalf of the community of patients in pain, with people living with pain, some of whom are present with us today, representing patient organisations and people with pain – on behalf of them, on behalf of the British Pain Society and others to thank those who were on the Scientific Advisory Committee, the Project Board and the Governance Committee. But I would particularly like to draw attention to Dr Cathy Price, who was both a leading author on the final report and also chaired the Scientific Advisory Committee, and Dr Steven Ward, who chaired the Project Board itself, both of whom are here with me now. So with that I’ll hand over to Cathy.

Cathy Price: Thanks Richard. I haven’t got such a loud voice as Richard, or maybe I have, maybe my kids will tell me otherwise. I just wanted to run through some quick highlights of the pain audit to represent what’s happening in pain management in England and Wales, as best we can.

Successive reports from government suggested that we didn’t know how well pain services were doing. When people tried to find out a bit about them, it wasn’t clear who they were seeing, how many of them there were and the outcomes from them. Patients didn’t know how to find them, GPs didn’t know how to find them, and so, at the very least, some sort of geography to the pain services was needed. Then the reports recommended that we also find out a lot more about them.

Evans: What have you found out about them?

Price: There’re quite a lot of them actually. The main things are that they seem to be seeing people who have a very poor quality of life – much worse than if they had one single condition. So it suggests people have got multiple health conditions. We found overall 161 different providers in England and Wales – of those, 214 different clinics – so some people are really scattered about. We also found that 28 primary care trusts in England didn’t appear to have any pain services at all and perhaps they were borrowing from other areas.

So there’s a great big variation in actual services – there was an even bigger variation in the type of services. And for pain services the standard is multidisciplinary clinics. And we found that in England only 40% of clinics could truly call themselves multidisciplinary. It’s a bit higher in Wales – about 60%. And that means that they are not really able to offer the full range of treatments or get the most effective outcomes of care.

Evans: So is your aim to name and shame or to kick people into action?

Price: [laughs]. From my perspective it is to highlight where there is variation. To highlight where there is apparently less than good practice – it’s then up to the people in those areas to decide what they want to do. But unless you name people, then, probably nothing ever happens. We found that clinicians have been trying to get multidisciplinary services and yet their voice has not been heard. We hope that the National Pain Audit will give that voice to them.

Evans: Right, okay, we are not going to name and shame – where’s the best place to have chronic pain in England and Wales?

Price: [laughs] It looks like it’s somewhere around Gloucestershire and Ipswich are around some of the best services, so, particularly the South West, and Suffolk area seem to be doing well with pain services, as does the far North East of England.

Evans: So – those are the places to go if you’re hurt?

Price: [laughs] Well, I suppose that they could be – but we’d hope the other services can get to their level.

Dr Steven Ward: If patients and their GPs don’t know about the services, where they are, who to refer to, what’s on offer, and occasionally, if they don’t recognise the benefits that can be accrued from referral, then there is a significant issue for patients. And I think we recognise, both us as professionals and patients and the patient organisations, recognise that there can be serious delays in the time to referral in the patients’ journey from the first development of a serious pain problem through what was on one occasion, in a separate survey, found to be a seven-year period during which the patient suffered their pain before they were referred to specialist pain services.

And it’s not unusual for these patients, this group of patients, to be sent from pillar to post, first of all, maybe with what ultimately turn out to be – but very well intentioned – but turn out to be investigations that – necessary investigations – but they don’t actually lead to anything that helps, treatment that helps the pain.

And also because patients in this group often have complex problems: we talk about pain being a biopsychosocial phenomenon, so it has the biological aspect, so the actual mechanisms of it, the anatomical damage, the pathology that maybe responsible for it, but there is also the psychological impact of the pain, and on the person’s psychological profile – in other words, they may well become depressed and anxious, they will potentially have sleep problems – all sorts of things affect their mental health, and similarly, mental health can indeed lead to chronic pain. So the two are inextricably linked. So, there’s the bio, psycho and social: the terrible impact that this can have on relationships, on family, on carers and indeed, of course, the societal impact, the costs, but also of course, for the individual, the impact on their ability to work or get back to work. So it’s a very wide ranging problem that our pain patients have.

Price: People reported that pain had the highest impact on work out of all areas, so we absolutely need to take notice of that, part of the problem is that by the time people come to pain services, they come too late and they’ve lost everything. We’ve started, locally working with Remploy vocational rehabilitation specialists. They are going into local employers, trying to prevent people losing their jobs and finding new jobs for people. This has been a new approach pioneered in Southampton mirroring some work done in Cardiff in the mental health services there. It’s been very successful to date and I’d encourage others to adopt that model. Other services have worked collaboratively with other vocational rehabilitation specialists and they do see a difference. So one of our recommendations is that services need to do this.

Evans: It would appear to me that if pain is a biopsychosocial disease, then if you don’t address all three issues, in your pain service then it falls short?

Price: Absolutely. And for many people, I think this is the confusion for many people, in the primary care population, people manage pain – they learn to manage it relatively well and it’s not troubling them too much. But when it starts cutting into their life significantly, it starts taking over and impacts – on what we found highest – on work, and then on activity, and then on social life and friendships, overall mental wellbeing. And when it’s got to that level then you can’t just try and treat the pain itself, you’ve got to look at the pain and its effects and the biopsychosocial approach is really the gold standard for doing that. So, unless you try and do that with this population, what we’ve shown is that indeed the population is that which has got multiple needs, and yet the services haven’t got everything that they need to be able to deliver fully effective care. It feels to me like many are struggling – many people know what they should be doing but it seems very hard to ask or to develop the need for that. We hope that the National Pain Audit will have at least highlighted that there is a need for a biopsychosocial approach with a multidisciplinary model.

Evans: The fact that patients have been pushed from pillar to post – does that mean that pain isn’t viewed as the problem itself – just as a by-product of something else?

Ward: Well, I would hate to generalise on that. But I think that certainly on occasion, we might interpret the patient’s history and experience as one in which practitioners – again, with all good intention – focus on the disease or on what they think might be the cause, with obviously good intention, with a desire to treat the root cause.

But, of course, if that isn’t found to be genuinely the cause of the pain, or actually there isn’t an abnormality there, because pain can occur either long after the original condition has healed up – such as shingles or a surgery or a trauma, or other conditions like a stroke, or whatever, spinal cord damage – that can lead to long standing pain problems, and the focus may be on the original disease or on the on-going disease, for example, diabetes, without enough focus on the pain.

So, some people are very keen to see that pain is regarded as a condition in its own right. I think it is sometimes a condition in its own right. There is no obvious remaining… or maybe no cause ever that can be identified for it – that doesn’t mean that the pain isn’t real – it’s very real. Equally, there can be a condition that is ongoing, where the pain is indeed a symptom if you like of – I’m a pain doctor – but it could be a symptom if you like of somebody else’s disease like a diabeteologist, a diabetes doctor’s disease. Absolutely the diabetes has to be addressed, but the message I would like to get out is that whether we regard pain as a condition in its own right or not, pain should always be addressed in its own right – that regardless of the patients other conditions – pain needs to be addressed, and, while trying to improve the patient’s physical or mental health, the pain itself needs to be treated. In fact, it’s the most common reason for a patient to go and see a doctor, but mystifyingly, it’s also pretty common that the patients come away with everything being managed except the pain.

Christine Hughes: I’m Christine Hughes. I’m the secretary and a trustee of Pain UK, an umbrella organisation that represents those charities where pain plays a significant part of the condition that they represent.

Evans: Now you’re at the launch of the National Pain Audit report tonight. Were you surprised at the paucity of pain management services throughout the UK?

Hughes: I wouldn’t say I was surprised, Paul, because having worked in this field now for seven or eight years, I realise how poor they are. But, yes, when I started I was shocked and I haven’t seen a vast improvement over those six years. I think there is more awareness and I think there are people working extraordinarily hard, like the BPS and the CPPC, to improve services and raise awareness. But it’s not happening fast enough for a lot of people who do suffer appalling pain, and who often aren’t asked about it.

Evans: What do you think the next step should be for the report writers or the report publishers?

Hughes: The thing that is important is to be able to go nationwide, if you like, and the only way that we can do that is if NICE do take up the quality standard and provide guidance. And then we will have a national standard that people could then hold up to commissioning bodies and ask them – you know – the basic question, why aren’t you providing this? And so I think that is probably where this has to go.

Evans: Now you’re a volunteer for pain UK, which is an umbrella organisation, if you like, covering people like Pain Concern?

Hughes: Yes, we have 23 full member charities which range from quite big charities like Arthritis Care, right through to very small ones like Vulval Pain or Pelvic Pain who are really, almost, one man charities. Our average charity has – I must get this right – but I think it is 5.6 full-time members of staff. But I think that the majority of them actually have, less than one member of staff. So these are charities where people are working extremely hard, mainly using volunteers, and they can’t hit all the buttons, which is why it’s very important that we hit pain for them. I’m talking about things like the Polio Federation, I’m talking about the Limbless Association, I’m talking about the Spinal Injury Association as well as lupus, and fibromyalgia, and, you know, rheumatoid arthritis…

Evans: And these are all people who should be affected by the National Pain Audit report?

Hughes: Yes, they should, it will help all of them, even though most of these charities are fighting very hard for services for their particular condition. You know, if you have endometriosis, you need somebody fighting for a better understanding of that.

But, at the same time, there will be pain that will not be resolved just by treating the endometriosis, and for those people these services, these that the pain audit has highlighted are really important, and that goes for every condition I’ve mentioned. You know, if you lose a limb through diabetes or an accident or whatever, you have phantom pain, or you may have appalling post-operative pain. And you need good pain services to deal with that. And that is not directly linked to not having a leg, which might be more about having a prosthesis than anything else. So, yes, it’s something that overrides nearly every long term condition and we need both things running alongside – good services for rare, long-term conditions, as well as good pain services.

The thing that stuck out for us was really the people’s report of their quality of life with pain. The Europe poll score was about 0.4 was very low indeed, and what that’s telling us is that people have got many health problems and that it’s on a par with those sorts of conditions, long-term, severe neurological conditions and forms of dementia, in terms of people’s general experience of life, [people coming to] specialist services.

One of the things that came out of the audit is the high health care use that patients have before they come to a clinic. We found 16% of patients had been to A&Es, which was much higher than we were expecting. After they had been to a service it had dropped down to 9%. Hospital beds are very costly, especially unscheduled care visits, and so to me that could potentially pay for a service in itself, if we were able to address those emergency visits.

It’s very hard to create a case of need when the majority of care is for social care, and we shouldn’t really have the divide that we do. However, pain services exist within health services and we have to create the case of need from within the health needs. If people are frequently attending hospital, that suggests that their needs are not well met and it’s expensive because poor quality care costs more. And I think that we can have sufficient [evidence] there to demonstrate that we can cover costs.

Evans: And the other thing is that – when I go to my GP, he gets paid for my diabetes, but he doesn’t get paid for my pain.

Price: Absolutely right, it’s been a source of quite great frustration, really, that we have not been able to get some sort of quality outcomes framework register for pain. I think that’s because it’s been very hard to define and set some reasonable quality standards. I’m hoping that the quality standards that we’ve developed with the National Pain Audit can be highlighted to NICE, and indeed that’s what we’ve recommended to NICE, and that those over time can be incorporated into QUAF, or whatever succeeds QUAF in the future.

Jean Gaffin: My name is Jean Gaffin, and I’ve been hanging around the pain world for quite some time. I first got interested about 25 years ago, 24 years ago, and I became chief executive of arthritis care, where I was constantly, constantly, constantly meeting people living with the pain of rheumatoid arthritis and osteoarthritis. Nobody bothered very much. Then I went to work in the hospice movement where dealing with pain was a priority. When I finished that job, I saw an advert for the chair of a patient liaison committee, the Pain Society, and I’ve been hanging around pain ever since trying to increase understanding of it, increase management of it, and, through the Chronic Pain Policy Coalition, get parliamentarians involved, so now we’ve got an all-party group on pain. So we’re very, sort of a, mish-mash really of concern and interest.

Evans: Now we are at the National Pain Audit launch this evening, what were your reactions to it?

Gaffin: I think it’s an incredibly important piece of work, not just because it’s an examination of how many pain clinics there are, or how few there are really, relative to the needs of the population, because they have done this very important research. Nothing new, but just reinforcing, and more scientifically perhaps than what we have done it before, just what the burden of pain is, to people living with chronic pain, in terms of work, in terms of quality of life and so on.

And I gather that there are going to be more statistics coming out from another National Survey and I hope in the end we will build up a real head of steam – not easy in this world of cuts – to try and meet the needs of people living in chronic pain, which has been under managed for so long.

Evans: What surprised me was that the people who wrote this report, the British Pain Society, they had trouble in finding out all the statistics. Where do we patients stand on this?

Gaffin: Absolutely, you know the sign posting of services is minimal. I happen to be a trustee of my local hospice, and we had a clinical governments meeting in which two cases were brought to our attention, where there was an inappropriate referral to the hospice.

These were two patients, and I’m not talking about the last weeks or months of life, two patients who were in such pain that the GP didn’t know how to cope and there was no pain service that the GP knew about in the area. And so they ended up at an outpatient appoint with our hospice doctor, rather than in a proper pain service. I’m sure our doctor dealt with them, by the way, extremely well, I’m sure. But that isn’t quite the point. Because that’s not what speciality palliative care should be about, just pain relief.

Ward: As you’ve heard, this is just a step on the way now. This is the dissemination of the report, but the next step will be to make sure that it lands on the doormats of those who will hopefully engineer the changes that we need to see.

Evans: You are really speaking to the converted now – to me, to other members of the British Pain Society, to other people listening to this program who have persistent pain – what about the people who can really affect our lives, the politicians? What are they going to do about it?

Ward: Well, I think they need to answer that. We are leaving no stone unturned in terms of trying to access the politicians. We have sent the press release to a number of politicians who sit on the Chronic Pain All Party Parliamentary Group for chronic pain. We may have the launch this evening and the publication of the report with release by the Department of Health and HQUIP this evening and tomorrow. We won’t let it rest there, and we will be asking questions and we hope there will be some parliamentary questions in the follow up to the publication of this report.

We have indeed, sent copies to the Chief Medical Officer and Medical Director of the NHS in England and the Undersecretary of State for Health. So, we hope in that way to continue our lobbying of politicians and policymakers, our contacts in the Department of Health, who are responsible for drafting policy and advising ministers – we hope that through this continuous drip feed of data, information and canvassing, lobbying, that we will make our mark and we will improve the experience for future pain patients.

Charles Dobson: I am Charles Dobson, I work in the Department Of Health, and among other topics I have current responsibility for the policy on pain.

Evans: What does that mean?

Dobson: it means advising ministers. It means helping to facilitate the things which will improve pain services for patients. Say, for instance, I helped to secure funding for the National Pain Audit we’ve heard about today and also for the question in the health survey for England 2011 on chronic pain.

Evans: What did you make of the National Pain Audit review today?

Dobson: I think it’s very impressive, it’s a wonderful piece of work which obviously involved a tremendous amount of effort from everyone involved and it’s told us some things that we thought we knew already and it tells us some things which perhaps we didn’t know before.

Evans: Like?

Dobson: The very low quality of life on average of patients who responded to the questionnaire and who attend specialist Pain Services.

Evans: You’re a civil servant – your masters are the ministers – what would they do about it?

Dobson: They have set out a new vision, if you like, of the relation between ministers and the NHS at the coal face, through the NHS commissioning board as an intermediary. So, in the new landscape, ministers will set very broad priorities and the commissioning board will then decide where they need in particular to take national action.

Now, one of the five outcomes in the NHS outcomes framework is improving the quality of life of people with long-term conditions. And all the evidence we have shows that you couldn’t possibly do that without in particular helping people with pain and people suffering with musculoskeletal disease. So – it seems to me a no brainer – that the NHS commissioning board will want to take action on pain and on muscular – skeletal disease. And it’s very encouraging that they have within the last few days, advertised that they want to lead the commissioning board with this particular responsibility for musculoskeletal disease, so that will address one key component of the pain agenda.

Evans: That was Charles Dobson of the Department of Health.

Now before we end this edition of Airing Pain, let me remind you of our 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.

Don’t forget that you can still download all previous editions of Airing Pain from pain concern.org.uk, and you can obtain CD copies from Pain Concern. If you would like to put a question to our panel of experts will just make a comment about these programs, then please do so via our blog, message board, e-mail, Facebook, Twitter or pen and paper. All the addresses are at our website which, once again, is painconcern.org.uk.

Final words from this launch of the National Pain Audit final report go to Professor Richard Langford, President of the British Pain Society, Christine Hughes and Jean Gaffin, who represent patient organisations:

Hughes: What surprises me is how little we actually know about what is available for pain patients out in the big wide world of the British NHS, And I think this is the biggest problem for patients. Information, I think, is key and people go to their GP and very often, the GP, well, one doesn’t ask them about their pain, and, if they do find out about their pain, probably has not got the kind of knowledge – because it is a very specialised area – to help them on their pain, or know where to refer them. And because there’s so little knowledge out there of the services you could actually have a very specialised pain unit, fairly close to that GP and there’s a good possibility that he won’t even know about it.

So it’s about spreading information about what is available as well as what is good practice in the hope that we can then, in this new world of the NHS, commission new and better pain services across the country so that there is access for everybody. I think also quick access, because undiagnosed pain will become chronic and will become a disease in its own right.

Langford: Pain is now listed as a long-term condition in the long term conditions agenda. And so we hope that with all of our efforts, raising awareness of pain, and, indeed, lobbying policymakers and politicians and now, very much, commissioners, that we will see that pain rises more in the priority list.

Gaffin: I’m encouraged and have been for the last 15 or 16 years by the accumulation of data, which hopefully, eventually, will be powerful enough to influence commissioners. We’re not quite there yet, but I hope that we will be eventually to be able to do that.

Contributors:

Professor Richard Langford, President British Pain Society
Dr Cathy Price, British Pain Society
Dr Steven Ward, British Pain Society
Christine Hughes, Secretary of Pain UK
Jean Gaffin, Honorary Member of the British Pain Society
Charles Dobson, Department Of Health.

More information:

For more information on the National Pain Audit and to find out about your local pain services visit: nationalpainaudit.org.

The state of pain services in England and Wales: the National Pain Audit’s findings revealed

For the first time, the Audit will make available to patients and healthcare professionals detailed information on local pain management services. Richard Langford and Cathy Price of the British Pain Society discuss the reports findings, including the need for more pain clinics to adopt the minimum international standard for interdisciplinary services. This would enable them to take a biopsychosocial approach to pain management, which, as Richard Langford explains, can make a crucial difference to patients. Cathy Price also discusses how pain clinics could do more to help patients remain in or get back into employment.

Contributors:

Professor Richard Langford, British Pain Society
Cathy Price, British Pain Society
Christine Hughes, Secretary of Pain UK
Jean Gaffin, Honorary Member of the British Pain Society
Charles Dobson.

More information:

For more information on the National Pain Audit and to find out about your local pain services visit: nationalpainaudit.org.

Finding out about the role of the pharmacist and how service users can get the most from them

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Paul Evans speaks to Professor David Taylor from the University College London School of Pharmacy about the perceptions and reality of the pharmacist’s role and their skills. Pharmacist Emma Hinks talks about how pharmacists can help you with services like the Medicines Use Review (MUR), which looks at how you are getting on with your medicines. We also hear about the increasing emphasis on pharmacists communicating with their service users, working together with other services and recommending non-pharmaceutical forms of treatment.

Issues covered in this programme include: Patient experience, drugs, medication, pharmacy, prescription, education, policy, community healthcare, communicating pain and access to services.

Paul Evans: Hello, I am Paul Evans and welcome to Airing Pain, the programme brought to you by Pain Concern, the UK charity providing information and support for those of us who live with pain. This edition is supported by the Scottish Government and complements a poster campaign by Pain Concern and Pain Association Scotland to encourage people with pain to ask for advice from their pharmacist and to promote awareness of the information, resources and training available for self-management. So, let’s start with the basics: what is a pharmacist? David Taylor is Professor of Pharmaceutical and Public Health Policy at University College London School of Pharmacy.

David Taylor: A pharmacist is a person who today has been through at least 5 years of education about medicines: how to use them, how they should be stored, the people who use medicines. Now, in the past, the pharmacist was the expert on medicines. Today, we like to say that they are the expert on not only medicines but the people and communities who use them. So it’s a role which in the past was closely connected with medicine. Up until the beginning of the last century, of course, pharmacists made the medicines in their shop. That changed with the development of the pharmaceutical industry and through the 1950s onwards, there’s been such a lot of dispensing that people perhaps lost sight of the fact that pharmacists are healthcare practitioners. But now a lot of that is becoming mechanised and we’ve got much more emphasis on understanding, that with an aging population, we need to help people use their medicines to best effect. And so the focus is now on pharmacies contributing to clinical care as well as supplying drugs, which is very important to do properly. But supply alone is not enough; it’s making sure and helping people to use them to the best effect.

Evans: So, perhaps the common perception of the pharmacist, the chemist, just handing drugs over the counter that the GP has prescribed, is completely wrong?

Taylor: Well, I wouldn’t like to say people are completely wrong. People’s experience has been – sometimes it’s been the counter assistant handing over things and people think it’s the pharmacist, and the pharmacist has been in the back of the pharmacy busily dispensing. That probably isn’t the best way to use somebody with a lot of education; not only the five years before you qualify, but all the work that’s put in afterwards in continuing professional development. I think there’s a greater realisation on all sides that the pharmacist should be playing a more direct role in care, but that’s certainly not the fault of the customers. It’s understandable if customers got the wrong message in the past, but that’s something we are changing now and hopefully, there’s variation in all professionals: doctors, nurses, pharmacists as well, but hopefully now pharmacists should be much more open to listening to the people who come into their stores (I hesitate about the word patient because I prefer to think of us all as normal consumers, whether there’s something wrong with us or not) but the people in need of services, service users – pharmacies should be open to listening and helping as much as they can, especially around issues of medicines use. But there are also issues of prevention, lifestyle, and coping with illness, which again one would expect the modern pharmacist to be able to contribute to.

Evans: Now, you’re not a pharmacist, you are a professor of pharmaceutical and public health policy. What does that mean?

Taylor: In this context it means that we should understand individual cases of pain within the framework of the wider community, the services available, the sorts of beliefs people have about pain, the range of things that we’ve got available both in the private sector and in the public sector to help combat it. So it’s taking an overview of what the problem is, about what the potential solutions are and making sure, for example with something like back pain, it should be public knowledge that often the last thing you want to do when you have an episode of back pain is to stop moving around. It’s important to keep going. Other examples where you’ve got, say, an acute inflammation, it may do your joint no good to do that. So getting this sort of public understanding because so much of care, of course, is self-care with professional support. So it matters critically that the population, you and me together, have a basic knowledge of health issues. It enables us to behave sensibly, to minimise the distress and maximise what we all want to do, which is age as healthily and as happily as possible.

Evans: You co-produced the University College London paper Talking About Pain. Now, the headline is ‘Eight less pain questions to discuss with your pharmacist’.

Taylor: Yes, that was part of a wider study we did about relieving persistent pain and improving health outcomes related to pain, because we now realise that pain should be seen as something very important itself, not just as a symptom of other conditions that we take more seriously. So this research was done in University College London and with colleagues in the NHS, and, for example, Dr Roger Knaggs of Nottingham University. The talking about pain instrument was something for pharmacists to use when talking to their customers about their experience of pain: so how long the pain has gone on for, did it start at a particular point, how did it start, how severe is it, what does it feel like, is it stabbing or tingling? All those sorts of questions which should help a health professional to understand the problem they are dealing with. That’s not to say that there are magic cures sometimes, but it can mean that we use medicines to better effect. Even very simple things, like people are told to take a medicine three times a day, at mealtimes. Now, if you happen to have tea very early, say, 5 or 6 o’clock in the evening, and you don’t have a breakfast till 9 o’clock the next morning, it’s not going to be very surprising if you wake up with pain in the night because three times a day actually means once every eight hours. Something as simple as that can make a big difference to people. So many of the simple things we could do, for example, some sorts of painkillers will make you constipated. Have people been helped to ensure that doesn’t happen to them? Other issues about if a painkiller is working, some people don’t convert the medicines to the active ingredients in their body as well as others. That should be found out about. And sometimes a particular sort of medicine may work in ordinary pain but in chronic special pain cases, so-called neuropathic pain cases, they may not work. Differentiating and making sure we’ve got horses for courses is what good pharmacy care is about.

Evans: David Taylor, Professor of Pharmaceutical and Public Health Policy at University College London School of Pharmacy.

Now, devising policy is one thing, but how does that policy affect you and me? Emma Hinks is a pharmacist working at Prince Charles Hospital in Merthyr Tydfil. And she’s community pharmacy facilitator for Cwm Taf Health Board in South Wales.

Emma Hinks: Through the last couple of years the pharmacy contract that pharmacies have with the National Health Service to provide services has changed considerably and a lot of new services have been introduced for pharmacies to deliver. Probably the most commonly known is the Medicines Use Review (MUR) Service, which is where pharmacists sit down with a patient and goes through the patient’s medical condition and also the medicines they use to control their condition and to look at ways to maximise that therapy.

Evans: So how would I get a medicines use review?

Hinks: You can request one at the pharmacy, you can self-refer or the pharmacist may feel that you would benefit from one, so they may offer you the service, as well.

Evans: But how could I possibly benefit from one, because my doctor does that.

Hinks: What the medicines use review isn’t, it isn’t a clinical review of your medical conditions, so it doesn’t look at test results and about the clinical decisions around your therapy. It’s very much more about how you use your medicines and what you understand about your medicines, to try to maximise the benefit that they give you. Lots of patients tend to find that they don’t like to ask questions; sometimes they might be feeling like they are underusing medicines, they might be overusing them, if they’re not thinking that they are controlling their symptoms. And what the medicines use review is, it’s an opportunity to sit down with a pharmacist and go through all of those sorts of questions or concerns that patients may have about the tablets they are taking.

Evans: But certainly there is an attitude, that if a doctor has given you a tablet, then it must be correct.

Hinks: Yes. And again, this isn’t about questioning whether it’s the correct tablet for you. It’s around, are you using it in the most appropriate way to get the maximum benefit from it? Lots of patients find that, if they take multiple medicines, some need to be taken before food, some need to be taken after food, some it doesn’t matter when you take it, and it’s about formalising a process around what each tablet does, why they do it, and what’s the best way to take it. And that way you can help patients manage their conditions better, and also you can make sure that the NHS is using their resources properly because by taking medicines properly, then what we’re doing in turn is managing patients’ conditions more effectively and then we’re reducing any waste in the system as well.

Evans: My personal experience is that I take several repeat prescription drugs. I called in to my pharmacist last Friday and there was a big green and orange sticker on them and the pharmacist said, ‘Can I have a word with you about this?’ And I thought, ‘Well, what’s going on here, what have they found?’ She sat me down and talked about the things: ‘Do you have any problems with them?’ ‘No, I’m absolutely fine, they’re doing well, they’re bringing my blood pressure down; everything seems to be fine.’ And she said, ‘Any other health issues?’ And I said ‘Ooh, I’ve had a cough since October.’ She immediately looked up at me, recognised the problem, said: ‘I heard you coughing’ and immediately pointed to one of the drugs I was taking. It’s a very well-known side effect of that.

Hinks: Absolutely. Yes, I take that tablet too. And that’s what MURs are about really: it’s about identifying medicines related issues that you may think are trivial or you may not attribute to something in particular but can be something which can affect you taking your tablets. Some people who get coughs when they’re taking the medication will stop taking the medication, or they will think, ‘This is the only option for me, and if I don’t take this then I won’t be able to do anything else,’ and that is certainly not the case. There are lots of different medicines that work in different ways, so if you get problems with one, you can look at recommending a change to something else. That would be what anyone would do: identify the problem and then refer that on to the GP for the GP to look at how is best to resolve that issue going forward for the patient.

Evans: But, you see, I’m absolutely staggered by this, that the pharmacist knew immediately, you knew immediately what I was taking without me telling you, but it had been missed.

Hinks: I think what the MUR service does quite nicely is it sits alongside the GP reviews. So, GPs do a fantastic job and pharmacists do a fantastic job, but working together on things they can perhaps start identifying things that perhaps one or the other might not have picked up on in the past. And that’s what the MUR service is all about – it’s about identifying the medicine related problems, referring those on to the GP for the GP to look at how those medication-related problems can be resolved to ensure that the patients get the best treatment that we can give them.

Evans: I had my flu jab last year in my local pharmacy and I was asking the pharmacist who did it and had been on a training to push needles into me, how she was finding this new role in her job, and she said, ‘I love speaking to people and just sitting down and talking to them. We should be doing more of that.’

Taylor: Sitting down and talking, communicating: that is fundamentally important. So, in the past we had very rigid boxes and put nurses in the caring box, pharmacists in the drug management box and doctors in the pure diagnostics box, etc. And, of course, [there was] a huge social hierarchy around those divisions. Now I think we can blur the roles between professionals and consumers, overlap more, try to be more effective, to use our collective knowledge to best effect.

Evans: Many people won’t understand different forms of pain relief. Some you can buy straight over the counter, or from high street shops, like paracetamol. What are the differences between these things? Are there things we ought to know?

Taylor: Certainly, if your pharmacist is desperately busy, then he or she might not have time to explain but normally they explain to people the difference between, say, opiates –morphine-based drugs – which we tend to think of as for more severe pain, and for example the normal non-steroidal anti-inflammatories that you can buy over the counter, like aspirin. The key thing to know there is that those over the counter medicines are normally provided for short-term pain relief. So something that’s happened to you, you’ve had a blow for example and there’s pain in the arm or pain in your teeth, then you may need short-term relief for that. But for long-term relief it’s much better to have coordinated proper medical and pharmaceutical care. So not, for example, topping up medically prescribed drugs with privately purchased drugs, which you don’t tell anyone about. It’s a very good idea to avoid that and to be open with the pharmacist and if you have problems communicating with the doctor, ask the pharmacist to help you do so effectively.

Evans: Many people who take medication for chronic pain complain that the side effects can be worse than the original condition itself. Can you help on that?

Taylor: All healthcare professionals, doctors, pharmacists should be able to listen very seriously when people tell them that and do the best they can to help. Sometimes, we have a difficult situation in that the control of pain is not perfect and we may have to pay through suffering some side effects. So, don’t necessarily expect perfection but normally therapy can be improved and, as necessary, specialists in pain like Dr Knaggs, who I’ve mentioned recently, who worked with us on developing our talking about pain instrument, will have experienced the problems before. The key is communicating: if you don’t tell people, then you won’t get the benefit of their knowledge.

Evans: High street pharmacies are commercial operations. Could there be a conflict of interest between pharmacies promoting self-management – things like cognitive behavioural therapy (CBT), relaxation – as opposed to selling drugs?

Taylor: I think there’s always a potential for conflict of interest, wherever you work, whether you’re a GP, paid by particular incentive schemes. The great majority of pharmacists I know are deeply ethical and concerned people. What they know about most is medicines and I think if there’s a bias there [it’s that] their training may historically have been focused on drugs rather than on people. But modern pharmacy training is about being aware of the value of psychological therapies, the values of CBT in pain and being able to signpost where this is necessary if pharmacists themselves can’t directly provide the treatment. So, of course it’s true, there’s conflict of interest everywhere, even in journalism, dare I say it, but as you know, good people try to overcome that and do the best job they can.

Evans: Professor David Taylor. Emma Hinks, community pharmacy facilitator for Cwm Taf health board once again.

Hinks: What community pharmacists can also offer are a range of additional services. Now we offer smoking cessation services through the community pharmacy, there are minor ailment services in development and being run within community pharmacies, so they offer a sort of wide range of services. But also onward referral to other services when they can’t help.

Evans: But, moving away from that, tablet counter…

Hinks: Absolutely, from the traditional service, which everybody sort of associates with community pharmacy. I think one of the other key things that they can refer you into – do you know much about the Expert Patient Programme?

Evans: Well, I’ve done the Expert Patient Programme, and I know that many people who listen to Airing Pain have done it as well.

Hinks: Yes, we’ve worked with the local Expert Patient Programme team to try and develop links between community pharmacy and the service. So we’re looking at how community pharmacies can refer patients into those services, because I know patients with many chronic conditions find that a really helpful and supportive environment in which to learn skills to help them cope with their conditions.

Evans: Of course, the thing about the Expert Patient Programme is that it is not run by health professionals.

Hinks: That’s right, yes. It’s run by volunteer staff who are usually patients who have suffered with a chronic condition themselves and, therefore, it’s very much about supporting lifestyle changes and things you can do to self-care. So supporting management of a condition by managing certain aspects yourself.

Evans: And I seem to remember that one session was devoted to how to use your pharmacist.

Hinks: That’s right, yes, and it’s around building links again with this Medication Use Review, and things like that, so encouraging patients to speak to pharmacists when they’ve got medicines related concerns.

Evans: You’re based at Prince Charles Hospital in Merthyr Tydfil, which is part of the Cwm Taf health board. In previous generations, this has been one of the heaviest industrial areas and one of the poorest areas in the UK. Pharmacists in this area health board have started visiting people in their homes.

Hinks: We’ve already talked about the Medicines Use Review service, and it’s been running since 2006. One of the things that we’ve picked up, as we’ve gained from experience of commissioning the service, is that the patients who access it find it very useful, they learn from it. The pharmacists delivering it enjoy speaking to patients about their medicines, they enjoy having protected time where they can sit down and build a relationship with patients, but what we found was that there were a number of patients that weren’t able to access that service because they’re housebound. So what we’ve done locally is we’ve introduced a service whereby pharmacists can go out and visit those patients at home, so that we can ensure that all patients have access to a service which is of value and demonstrates some really good outcomes.

Evans: We’ve talked a little bit about GPs and over the counter pharmacists. Another issue people might have is when they’ve been in hospital, and they’re looked after with the pharmacists in the hospital, they’re given a pile of drugs. What happens when they leave?

Hinks: Traditionally, that I think has always been something that we recognise has been a gap, maybe in the transfer of patients back from hospital to their GP and moving forward in their care. What the Welsh Government did back in 2011 was again introduce a new community pharmacy service called a Discharge Medicines Review Service, which aims to bridge that gap, to support patients in that transfer of care. And what the service is designed to do is to make sure that both the patient and the GP have the same information about the medicines following the discharge from hospital. And the review helps to ensure that patients continue to take the medicines they were prescribed in hospital once they come home. It’s a two part service – the first part is very much around checking that the medicines are the same when they come out of hospital, and again there’s a follow-up appointment a month later which is very similar to a MUR and that looks at how you’re getting on with those medicines, so since you’ve been discharged, have you had any problems with them, is there anything that you’re concerned about, is there anything that you’ve forgot to ask when you were discharged, when you had the opportunity to speak to the pharmacist, and again it’s just a chance to reinforce information and to chat through any problems you’ve got. It also involves the pharmacists working with your local GP to make sure that that list of medicines is right for you.

Evans: I just want to talk about how important a pharmacist can be in the community. You won a Royal Pharmaceutical Society award for something you did with a long forgotten disease (I thought): tuberculosis (TB).

Hinks: Yes, we did a screening programme in a local community within Cwm Taf, where they identified some patients with latent tuberculosis, which is quite easily treated with antibiotics but what you tend to find is that patients have problems taking that medication. It is quite strong and it can cause side effects and from the research that was available it showed that whilst patients should take it for three months, lots of patients dropped out of treatment because of the problems they were getting. So what we introduced was a service whereby the community pharmacists monitored those patients, and they picked up the medication every fortnight and the pharmacist went through any problems they were getting with their medication. And we found that the success rate and the completion rate amongst those patients was much higher than in previously documented reported completion levels.

Evans: So it’s the pharmacist. The community pharmacist is able to do not just the collection of data but to be the person to talk to and to encourage the patient.

Hinks: That’s right. I mean, they worked very closely with the hospital consultant and the TB specialist nurse, who were obviously involved in the care of those patients and what they did, they were like the first point of contact. So if there was an issue that the patient was concerned about they would come and chat to the pharmacist. If the pharmacist could resolve it they would. If the pharmacist felt that they needed to be referred back into clinic then they would telephone the clinic and get that patient seen as quickly as possible. So it was very much a multidisciplinary approach to it with different professionals working together in a different way to improve patient outcomes.

Evans: Now, we’re in Cwm Taf health board, which is Merthyr Tydfil, the Rhondda Valleys, the old industrial centre of South Wales – mining, steel, iron, heavily populated. Each area health board will have its own policy. How would someone with chronic pain find out what their local pharmacists will do?

Hinks: The easiest way for a patient to find out what services are available to them locally is to visit their local pharmacist. That pharmacist will obviously know which services they provide themselves and will also know which services the pharmacies around them provide. And each health board has also got its own individual website, so if you visit your local health board website there will be information there about community pharmacy services.

Evans: Now I just need to remind you of our 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 related 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. In this edition of Airing Pain we’re looking at the role of the community pharmacist, and how he or she could help those of us living with pain.

So how should we approach a conversation with our pharmacist? Here is David Taylor again.

Taylor: Well, I think that if you’re not used to speaking to your pharmacist about clinical issues, there may be a degree of uncertainty. I think the best thing to do is to choose a time when the pharmacist clearly is not dealing with a host of other issues in front of them, and to say, ‘I’ve had a long standing problem with pain, or a member of my family has. I’d really like to talk to you about it, and about the value of medicines and how to use them properly. Do you have time to talk to me now?’ To be open about it. Now some pharmacists may feel that they’re uncertain in that area – we don’t all have the same areas of expertise, and when you think of the range of things which can happen to our bodies that’s not surprising. But I think if one is open and asks for support, most pharmacists would be only too delighted to spend some time, share some time, going through the problems. Remember that the important thing to do often is to go in with it in your mind what you want to say – if there’s a side effect or a fear you’ve had that you’ve never told people about before. Some people don’t talk about their pain because they fear it might be an indication of, for example cancer, which I happen to have had, but nowadays people can get better from cancer. So often most pains aren’t due to cancer but that’s a quite common thing – people don’t talk about them because they fear it’s something horrible and they don’t want to find out. Now, getting over those things, being clear that you want to communicate to a health professional, is important.

Remember, when you’ve communicated to one health professional it’s often easier to communicate to the next, so sometimes talking to the pharmacists helps you then go and talk to the doctor, helps you talk to your nursing support. Becoming skilled at communication, respecting others, never talking down too much to others who you think may not know as much, or up too much to people you think are hugely informed and sometimes they’re not, just being clear and getting across the key messages that have been worrying you, I would say is the key advice.

Evans: Because the consultation is a two way process, isn’t it? It’s not just you looking at me, if you are a doctor looking at me and saying, ‘This is what’s wrong with you’. It has to be me gathering my thoughts and saying, ‘I am depressed, or I hurt. This is what is on my mind; this is what is worrying me.’

Taylor: Absolutely Paul. I think you’re completely right that it’s that ability and responsibility to communicate on both sides. Doctors aren’t psychic, neither are pharmacists, neither are nurses – they won’t know unless you’ve told them. At the same time they’ve got to be capable of expressing themselves clearly when the time comes. But for the consumer to say, ‘Well, I’ve tried that, it didn’t work, it hasn’t worked for me,’ but to do it in that spirit of good faith, and mutually working towards an agreed aim, but not being passive and not accepting quietly inadequate care, perhaps out of politeness to the doctor. I’m sure that isn’t what most members of the medical profession want, I’m sure it isn’t what most pharmacists and nurses want. They want people to be able to say clearly their needs when a problem hasn’t been resolved. So it may be difficult, it may be that you feel like you’re being a bore, but if you’re hurting, if you’re in chronic pain and it hasn’t been resolved, then keeping on telling people and pushing for better services, whilst at the same time not being unrealistic and not being unreasonable.

Evans: It’s the 21st century where we are now. Where do you think the role of the pharmacist will lead?

Taylor: I think, probably, as with all professions, as computers get smarter at doing basic jobs like providing information (we’ll probably be able to talk to them soon), like for example the electronic transmission and prescriptions and then going into dispensing machines, the pharmacist’s role will become more clinical. I’m reasonably sure that it will be more similar to what we thought of in the past as the general practitioner role. And there will be big opportunities and roles for general practitioners as care gets more complex in the community, and as our populations age, that they support complex cases and we allow this gradual cascading down of authority, power and tasks, ultimately to the consumer. So for example when somebody has got a diagnosis of type 2 diabetes, which can involve pain problems of course, they are more enabled to understand their condition, to eat properly, to exercise properly, to safeguard themselves. So gradually all the time in society we’re trying to move that point of authority closer to the consumer, and that’s not to deprive them of the care they had in the past, but to acknowledge the fact of consumer sovereignty; that most good health is down to the efforts of individuals and their families. And what professionals can do is help, but as soon as they just try and take total power, that often is more disabling than it’s worth.

Evans: David Taylor, Professor of Pharmaceutical and Public Health Policy at University College London School of Pharmacy. Don’t forget that you can still download all previous editions of Airing Pain from www.painconcern.org.uk, and you can obtain CD copies directly from Pain Concern. If you would like to put a question to our 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. Once again, it’s www.painconcern.org.uk.

Now, do check the websites of your local health board to find out what community pharmacy services are available in your area, because:

Hinks: Community pharmacists are a great gateway for accessing a wide range of services. If a patient has a medicines-related problem, then the community pharmacist is probably the first place to go. You can see them without an appointment, you can chat through any concerns you have, and they can then refer you on to any other health professional they feel necessary.

Evans: So, we should use our pharmacists?

Hinks: Yes. Look at what services they can provide and use those services to help patients gain the best from their treatments.

Contributors:

Professor David Taylor, Professor of Pharmaceutical and Public Health Policy at the University College London School of Pharmacy
Emma Hinks, Community Pharmacy Facilitator for Cwm Taf Health Board in South Wales, Pharmacist at Prince Charles Hospital in Merthyr.

Finding out about the role of the pharmacist and how service users can get the most from them

Issues covered in this programme include: Patient experience, drugs, medication, pharmacy, prescription, education, policy, community healthcare, communicating pain and access to services.

Contributors:

Professor David Taylor, Professor of Pharmaceutical and Public Health Policy at the University College London School of Pharmacy
Emma Hinks, Community Pharmacy Facilitator for Cwm Taf Health Board in South Wales, Pharmacist at Prince Charles Hospital in Merthyr.

At the age of 24, Kiera Jones’ career as a scientist was abruptly disrupted by the onset of chronic wrist pain. She tells us about the frustrations of the condition and how she is gradually finding ways to work around it to get her career back on track

Three and a half years ago my life was very different. I was one year into a PhD in Chemistry at the University of Leeds doing lots of experiments: practical, hands-on work using lasers. My typical workday would involve going into university, setting the experiment up, recording data and then analysing it on the computer. Then I’d head home to rustle up some dinner before meeting with friends for the evening. I’ve always been a very active person, and so at the weekends I loved to get outdoors as often as I could. I went hiking, scrambling, rock climbing, caving; all sorts of different activities. Even if I had a quiet weekend I would still squeeze in a quick swim, or a game of badminton or squash.

But that was a long time ago, before I had the pain. It started fairly innocuously, and for no apparent reason – my right wrist simply got a little bit sore whenever I was using it, whether in the lab or in the office. A couple of weeks after that, my left wrist started to hurt as well, and it gradually got worse and worse until I simply couldn’t go into university anymore. I packed up my things and left, signed off as sick. I had no idea then that it would be nearly two years until I was back.

I moved back home to Gloucestershire and began the mammoth task of exhausting all possible diagnoses. Over the next few months I went through the whole rigmarole of seeing various specialists, and had MRI scans, X-rays, ultrasounds… the lot. I even had an arthroscopy, which was an operation where a little camera was inserted into my wrist, but nothing abnormal could be seen. All the tests simply turned up blank. No one could figure out what was wrong. But my wrists kept hurting.

Before I had chronic pain myself I thought that pain was just a bit of an inconvenience that you had to put up with. Being out and about all the time I always had scrapes and bruises, and every so often I’d twist an ankle or damage a knee. Yes, it hurt, but such little injuries are part and parcel of life. There’s a reason for them, they heal quickly and you get on with your life. The idea that pain was a useful signal to signify that something was wrong was well-entrenched.

Now, however, I’ve had to come to the terms with the fact that just because I feel pain, it doesn’t mean there’s anything physically wrong. Clearly, a diagnosis, a reason for the pain, is a comforting thing. It’s very reassuring to think ‘well I did that, which made something happen inside my wrists and made them hurt. I better not do that again’. But unfortunately there doesn’t have to be a reason. And, hardest of all to accept, there isn’t going to be some new diagnosis followed up by a magic cure. There is no defined future time when everything will get better.

With this uncertainty comes the difficulty of explaining to others what’s wrong. My family and friends try their best to understand, but some people seem to think that if there is no physical problem, if you can’t see a plaster cast or some other visible sign, there can’t really be anything wrong. But the pain is definitely there. Whenever I use my hands my wrists hurt: it’s a cramp-like feeling of variable severity. I also get stabbing pain if, for example, I lift too heavy an object. It rarely completely goes away.

There are several drugs available that can help people with chronic pain. I tried out three of these, but none of them had any positive effect. I was given various stretches and exercises to do, but these only exacerbated the problem. Reluctantly, I even tried acupuncture and TENS machines, but again these did nothing to help. It seemed like I was well and truly stuck.

I spent several months doing a lot of moping. But I’m not really one for sitting around listlessly, and so I gradually began to pull myself together. I got myself some voice-recognition software for my computer so that I don’t have to type, I can just speak into it, and that works really well. With the software’s help I wrote a book and started a blog (that I have, alas, currently let lapse). I started to do a lot of exercise – not the sort I used to do, but new activities like Pilates and running. A pain physiotherapist I saw a few times told me about Pain Concern and so I offered to be a volunteer. A few weeks later I was arranging interviews for the radio show at a huge conference. In other words, I started to turn things around.

While all these little activities were all well and good, there was still the gaping hole that was my future. I had spent my whole life training to be a scientist but experimental work is very hands-on and that’s what I like doing. Clearly going back to the lab wasn’t an option. I also couldn’t live in a student house in Leeds like I had done previously, as simple tasks, such as cooking and cleaning, can result in just too much pain for me to deal with. However, there was no way I was going to leave my PhD unfinished.

With considerable negotiation a plan was formulated. I would work from home, many miles from the university, part-time. To keep everyone updated with my progress I would visit my supervisor at least once a month. I would switch from lab work to computational work. So far, this plan has worked. The transition has been hard, but I’ve stuck with it for over a year and things are progressing reasonably. Working from home isn’t something I’d recommend as I rarely see anyone from 9 till 6, and it’s hard to work with so little support. It all gets rather lonely. However, it’s much better than nothing.

I can’t do all the activities I used to, and my social life is hardly glittering, but I’ve made progress. I joined a running club and have met loads of great people through that. The endorphins from the exercise are also an effective pain killer! I have to wear splints as I run otherwise it hurts too much, but that’s hardly a major inconvenience. I also help to run a social group where I now live in Exeter that organises pub and theatre trips, days out etc. I don’t see my older friends as much, but I make an effort to still keep in touch. It’s not the life I used to have, or the life I would choose ideally, but it is a life. It’s a life strongly influenced by the pain but not defined by it.

In summary, I think you have to try and accept that pain just isn’t going to go away overnight. You have to say ‘right, this is something I’ve got, and I have to deal with it’. It’s hugely, hugely rubbish, it causes huge amounts of suffering and it disrupts your life completely, but you have got to work from that point and do as much as you can do with the pain and try to build something good.

Kiera was invited to speak about her experiences at the UK Pain Summit. You can find Kiera’s blog ‘Look No Hands’ at: http://nohandsjones.blogspot.com/

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Peer Support. Join the community

Subscribe to Pain Matters

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

Fundraise for Pain Concern

Peer Support. Join the community

Subscribe to Pain Matters

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

Fundraise for Pain Concern