Pain Concern

We visit the EXPPECT pelvic pain clinic, where women share their experiences and advice for living with persistent bladder and pelvic pain

This edition has been funded by a grant from the Women’s Fund For Scotland.

Interstitial cystitis, a.k.a painful bladder syndrome, is a poorly understood bladder condition that causes long-term pelvic pain and problems with urination. The charity Bladder Health UK estimates that 400,000 people in UK live with the condition. Of them, 360,000 are women.

Anne Cameron, retired nurse and now coordinator for Bladder Health UK in Scotland, explains the varied symptoms and treatments available, and how certain factors can make the path to diagnosis far from smooth for some women.

Jen stresses the importance of support groups in alleviating feelings of stress and isolation, and Pat describes how she overcame her initial reservations to try different self-management techniques, including yoga and mindfulness.

Dr Shona Brown is a Clinical Psychologist and part of the multi-disciplinary team at the EXPPECT pelvic pain clinic in Edinburgh’s Royal Infirmary. She describes the impact of pelvic pain on patients’ emotional well-being and why it’s important to include a psychological approach in pain management programmes.

Issues covered in this programme include: Bacterial cystitis, bladder pain, EXPPECT clinic, fibromyalgia, IBS: irritable bowel syndrome, interstitial cystitis, irritable bladder syndrome, migraine, mindfulness, pacing, pelvic pain, support groups, urogenital pain and yoga.

Contributors:

Anne Cameron, retired nurse and Scotland Coordinator for Bladder Health UK
Jennifer Hayes, pelvic pain support group member
Pat Brown, patient at EXPPECT clinic at Edinburgh Royal Infirmary
Dr Shona Brown, Clinical Psychologist at the EXPPECT clinic at Edinburgh Royal Infirmary.

More information:

From diagnosis difficulties to defining gender: the effects of vulvodynia on women today

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Vulvodynia is a nerve-based pain, often described as a burning or stinging sensation, which affects the vulva. 1 in 7 seven women are estimated to experience Vulvodynia at some stage during their life and the condition can be very distressing to live with, impacting on everything from clothing choices to relationships.

Dr Winston de Mello explains why many women with Vulvodynia experience difficulties on the path to diagnosis and why GPs under pressure create a “postcode lottery” for those in pain without any visible symptoms.

Dr Rebekah Shallcross describes what she found in her research into women’s experiences of Vulvodynia, including instances of sexism on the part of some healthcare professionals, a lack of awareness of the condition within the medical community and the stigma associated with genital pain.

The role played by penetrative sex in social constructions of female identity can create complex feelings of guilt in patients with Vulvodynia where physical intimacy is problematised by pain, feelings which Dr Shallcross links with historical gender inequality and patriarchal attitudes towards sex.

Gynaecology consultant Dr David Nunns discusses the importance of the “four Ps” in patient treatment and improving the lives of those with Vulvodynia: patient education, pain modification, physiotherapy and psychological support. Plus the importance of discourse in raising awareness and reducing pain and associated stress.

Issues covered in this programme include: CBT: cognitive behavioural therapy, educating healthcare professionals, the Four ‘P’s, misconceptions, pelvic pain, the psychosexual approach, relationships, sex, stigma, raising awareness, Vulval Pain Society, vulvodynia, urogenital pain and women’s pain.

Paul Evans: This is Airing Pain, a programme brought to you by Pain Concern, the UK charity providing information and support for those of us living with pain and for healthcare professionals. I’m Paul Evans, and this is the first of two editions funded by the Women’s Fund for Scotland.

Winston de Mello: I would reckon one in seven women will suffer vulval pain some time in their lives, and it’s a disease that is frustrating to suffer from because there’s nothing to see usually.

Rebekah Shallcross: A lot of women used the phrase ‘I feel like I’m going mad – is this all in my head?’ just because they were repeatedly told ‘I can’t see anything so therefore there’s nothing wrong’.

David Nunns: Some of the women I see are quite disempowered by the whole process. They have tried to access healthcare, but often the problem has been belittled or they’ve been given an inappropriate treatment and that’s been a barrier.

Paul Evans: The vulva is the female external genitalia, the sexual organs, and vulvodynia is a condition where there is no skin disease, no infection, but the patient complains of burning, rawness or soreness in the vulval area. Dr Winston de Mello is a consultant in pain medicine at the University of South Manchester.

Winston de Mello: When you have vulvodynia which is essentially a nerve based pain it’s very different from the classical pain, like when you break a leg; the leg gets fixed and your pain goes away. With vulvodynia, the nervous system is involved and consequently the nerve misfires. So patients with vulvodynia will complain of burning or soreness down below, they cannot tolerate clothing or [their symptoms] might be provoked by clothing, exercise, insertions of tampons or even sexual intercourse. And you can see that the impact on their quality of life is huge, and also on their partners’ and families’.

The trouble is you see what you want to see. So for the general practitioner who’s got less than five minutes to make a consultation, if they’re lucky they may be sent to a specialist – and this could be a gynaecologist, it could be in genitourinary medicine, it could be a vulval dermatologist, or even a pain physician if there’s somebody interested in that area – so I think it’s a bit of a postal code lottery as to where they go. And this is what starts that long process of making the diagnosis.

Paul Evans: Dr Winston de Mello. Dr Rebekah Shallcross is a trainee clinical psychologist and research associate at the University of Manchester. She presented a paper on women’s experiences of having vulvodynia at the British Pain Society’s Annual Scientific Meeting in 2015.

Rebekah Shallcross: My research is split into two different parts really. The first part is a review of the literature that’s already out there. A lot of that literature is around women’s experiences with the sexual nature of vulvodynia and the impact upon relationships. But also, that research comes from a discourse analysis perspective, which basically means that it’s looking at how women talk about their experiences, and it analyses how they speak about it and infers meaning. So they talked about the journey towards a diagnosis as actually being quite harmful, quite long, quite difficult, quite emotionally draining.

Paul Evans: That was Dr Rebekah Shallcross. Dr David Nunns is a gynaecology consultant at Nottingham City Hospital. He is a trustee of the Vulval Pain Society.

David Nunns: It’s actually very easy to diagnose, it’s a bedside diagnosis. So we’d expect a health professional to take a history, carry out a proper examination of the vulva using a good light, excluding skin disease and infection. And then based on the history and the examination a health professional should be able to diagnose it at the first visit. So it is an easy diagnosis: there’s no need for any biopsies or additional MRI scans etc which have been done in the past, so it is an easy diagnosis to make based on the proper assessment.

Paul Evans: Well, if that is so, why do some women report the journey to diagnosis, as Rebekah Shallcross was saying earlier, as harmful, difficult and emotionally draining? Winston de Mello again.

Winston de Mello: It’s a disease that is often confused with other problems; common things are candida or fungal infections, urinary tract infections or sexually transmitted diseases, or sadly sometimes even the premalignant states. So it’s a diagnosis by exclusion, like most chronic pain conditions. The first thing you must be absolutely sure is that you have no red flags, i.e. no other explanation for this disease. So you’ve got to exclude the skin problems, the premalignant states, the malignancies and other differential diagnoses, and that is why it’s important, to a certain extent, the journey that a patient has to go [on]. So quite often these patients will doctor shop, will see so many specialists before the diagnosis is made.

Rebekah Shallcross: They experienced a lack of awareness of vulvodynia within the healthcare system. They encountered attitudes from healthcare professionals that were particularly unhelpful, feeling that some of the attitudes were simply because they were women. So for example they felt that they were labelled as neurotic or as frigid, or that they just simply needed to relax. ‘Get in the bath and have a glass of wine’ was something that a lot of women had been told, which is obviously particularly unhelpful when you’re in constant pain.

Attitudes around women and sex, again, so ideas that perhaps if they didn’t have a male partner that there wasn’t really anything to be worried about. All of these things – the attitudes of some healthcare professionals, I have to say not all, and the longevity and the need to be very very persistent, to keep going back to your GP, to keep asking for referrals, the need to do research yourself and look on the internet and see what clinics are available and ask for referrals, and a sense of having to do all the work themselves – all of those things had an impact on women’s levels of distress and their levels of pain as well.

Winston de Mello: Most doctors are trained to treat disease first. So in primary care the GP is trying to exclude a potential malignancy or some other disease process like inflammation or infection. There has to be a triage process by which the patient has got to have these dis- because obviously if you’ve got a disease that results in vulval pain then you’ve got to treat the disease first, and then the pain that coexists.

But if you’ve excluded all the red flags, i.e. all the diseases, then you’re left with this cohort of patients where there’s nothing to find. When I was in my youth these would be labelled as psychosomatic or psychosexual. Then it turned out that maybe it’s a dermatological problem so a lot of dermatologists got involved, and then the neurologists got involved, so it’s a very complex interaction [between] lots of factors which is why sometimes patients can fall in between the different clinicians.

Paul Evans: Is there a particular age when women might get this?

Winston de Mello: Twenty or thirty years ago I would say this was a young woman’s disease, late teens/early twenties. Now we’re finding [cases of vulvodynia in] children even younger, in the early teens, and even in the post-menopausal level, so it’s quite a big spectrum with a big peak in the late teens early twenties.

Paul Evans: And you have no idea what causes it?

Winston de Mello: We have some suggestions of why it might occur. It may be chronic infection – previous exposure to infections – it may be a virus; it may be drug induced; it may be trauma from repetitive stress injuries, so it’s a constellation of several things and the fashion changes as we get more information.

Paul Evans: Pain consultant, Dr Winston de Mello. Dr David Nunns again.

David Nunns: When I did my initial research nearly twenty years ago we found that the average length of time from the onset of symptoms to getting a diagnosis was around two years, because of lack of awareness. I think that’s probably come down in time in recent days because of better awareness amongst health professionals and women, but also the internet as well and people accessing information.

But there still seems to be a delay in accessing the right people. So people almost get stuck at a level of healthcare and can’t get beyond that level, and that’s what we really need to address: get the right patients to the right health professional.

Paul Evans: So how do you address that?

David Nunns: The awareness of vulvodynia at a health professional level is very important; that’s at the level of a GP, a gynaecology service, dermatology, genitourinary medicine service, and also a chronic pain management service as well. So all levels of health professional dealing with women’s health probably need to be aware of vulvodynia, and I think we’ve made some progress there. But also enabling health professionals to know when to refer on. Because if they’re not confident in management then they need to send on, and not all health professionals are confident or happy examining the vulva and taking quite a personal history of some of the women.

I think the other issue is the awareness of vulvodynia in the public as well. Despite being in this very sexualised society – much more so than twenty years ago – we have more awareness of vulvodynia but we still have a great difficulty for some women to come forward; to actually see their GPs and to then get a referral onwards. So there’s that empowerment that some of our women need to make that first step. That again is difficult because it’s a very isolating, private condition: often many of our patients feel they can’t talk to anyone about it, they can’t share their problems.

Rebekah Shallcross: Women often talk about things like believing for instance that in order to be a woman you have to have penetrative sex, and so obviously for women with vulvodynia that can be quite problematic. Now we might call that a kind of social construction: you know, to be a woman you don’t have to have penetrative sex and there’s lots of examples out there of, for example celibate women or lesbian women or women who simply don’t like to have sex, and who still identify themselves as women.

So there’s lots of these social narratives and discourses that women sort of subscribe to and believe in that can actually be challenged, and [it] can be helpful for women to challenge those social discourses because those things can cause psychological distress to women. So it’s not all about the experience of pain, it’s about what the experience of pain means to women.

Paul Evans: Do you mean women who choose to be celibate as opposed to women who can’t have penetrative sex, they do not choose to be celibate, so there are bigger issues in their minds?

Rebekah Shallcross: It’s not necessarily about celibacy, it’s about what we constitute as “real sex”. What a lot of women talk about is a loss of intimacy, but there are other ways to be intimate with a partner. And you’re right it’s not to say that that’s not difficult for women, but that there might be other ways around that that don’t involve penetrative sex but can still involve pleasure for women and also a sense of intimacy with partners as well.

Paul Evans: Rebekah Shallcross. So is there a stigma involved in a woman’s decision not to go to her doctor? David Nunns again.

David Nunns: The impact of vulval pain on an individual is so variable. Some of our patients have a chronic pain issue, an unprovoked pain that impacts on their daily function. And, as in any chronic pain condition, that really does impact on the way they lead their life, and I don’t see, in that group of patients, that there is a stigma attached in going to a health professional and getting access to care. They need help, basically.

Where there is less of a day to day pain management problem but more of a sexual pain problem – with an unprovoked pain aspect to their problem, that might be the case as well – then I think the impact on the dynamics at home in a relationship within, we call it the biopsychosocial model don’t we, where people are at home, living in the living environment and they’re functioning in the work environment, that can produce a complex problem that doesn’t necessarily lead them to access help. And it’s very easy just to forget about the problem in many ways. Whether that comes down to an embarrassment or a sort of legacy of stigma I’m not sure. I think there are a lost group of patients really who never access care because they’ve not been able, confident enough to come forward in the first place, and whether stigma’s attached to that I’m sure it is yes.

Rebekah Shallcross: Guilt and shame are certainly things that women talked about experiencing in relation to their relationship, because they believe that as a woman they are expected to provide sex for men. Relationships that were able to have what they term an egalitarian discourse, which basically is an equal discourse so that one person isn’t prioritised over the other, in those instances the communication between the partners was more open. Because of that they were able to have an open discussion about what each other wanted, and that enabled them to both, kind of, come up with creative ways to be intimate as a couple and to be happy as a couple.

And an example of that in a paper that I was reading, one woman talked about completely moving away from her partner in terms of physical contact – so, you know, not even hugging or kissing because of where that might lead – and she was able to talk to her partner about that and he was like ‘Oh! You know I don’t care about that. If you want to give my bum a squeeze-’ I think was the phrase she used, ‘then that’s absolutely fine, that doesn’t mean we’ve then, you know, that that’s going to lead to something that’s going to be painful for you’. So in that sense, because they didn’t prioritise the male’s need over the female’s need they were able to come to an arrangement that worked for them that they were both happy with.

Paul Evans: Is there still a legacy of what I guess was the Victorian idea of sex that the woman’s job was just to lie back, suffer and think of England?

Rebekah Shallcross: Well it’s interesting you say that because that phrase was also used by some of the women. One of the women that I spoke to used the phrase – and again I have to stress that this was in some instances, generally earlier on in the journey, when women got to specialist services it was a kind of different story – but yes, one of the women used the phrase ‘sort of like the Old Boys’ Brigade’. So, you know, women are going into these services and they’re often seen- it’s not necessarily about being a man in the system it’s about what kind of beliefs you have. So they encountered difficult attitudes from women as well. But yes, I think women did speak about sort of patriarchal attitudes within the system; that was certainly a phrase that one woman in particular used, and her thoughts really were around, economically, women aren’t as important, so we’re not contributing as much to the economy as a general statement. And that was her view [of] why this was seen as unimportant.

Another phrase that was used a lot was if this was a man, would I be having the same difficulties accessing help? So a lot of women compared vulvodynia to impotence and were saying that, actually, if this was something that was affecting men would there be more research into it and would I be able to access help more quickly?

Paul Evans: Rebekah Shallcross. Winston de Mello again.

Winston de Mello: I think the most important thing is to reassure these patients that the natural history of the pain is not forever. Up to 70% of women would get better anyway if they didn’t even have an intervention by the medical profession. So that’s the good news.

But what we can do is help that patient through their journey, and it’s using several strategies all at the same time. The most important being coming to terms with a chronic illness, and I think the best sources of information there are things like the website of the Vulval Pain Society, just getting some basic, everyday standards of care in place. And then you’ve got all your other strategies: medication and more complex interventions, nerve blocks and in very rare cases surgery.

But probably more important than all that is the psychological support, coping with the disease and knowing that there are other people around. So having patient study days that are run either locally or regionally or nationally are just as important for the woman to realise she’s not on her own, and it’s not unique.

David Nunns: ‘There’s no doubt that people get better from this condition’ – what does that mean? In our outcomes when we look at what happens to patients we’re looking for an improvement in their symptoms, so their pain will go down, they will have fewer flare ups of pain in an average week or month, their function will improve, they might go out the house more, less time off work, doing more things that we often take for granted, sometimes their mood can improve because they’re in less pain, and the final outcome we look at is their confidence in self-management. I would say that those are key outcomes for patients really: less symptoms, more function, improvement in mood and confidence in self-management.

And we can see that across the board, I think about 70% of patients, improve and feel happier with the treatment that they get. Now that treatment will vary according to the needs of patient, so some patients on a scale have very minimal symptoms and need simple reassurance in self-management, and some patients are very complex and need to be in pain clinics with a multi-disciplinary team.

But essentially we think of four ‘P’s: ‘P’ for patient education and knowledge; second ‘P’ is the pain modification through our pain modifying drugs, either creams, gels or tablets, or even more advanced pain modification; third ‘P’ is physiotherapy or physical therapy to the pelvic floor muscles; and the fourth ‘P’ is the sort of psychosexual, psychological support, CBT type strategies. So we can draw on quite a large evidence base of treatments and pull out lots of themes that work for women, and when we put them all together those four ‘P’s – and they all sort of go hand in hand – you get an overall package of care that often works. It’s a bit like making a sandwich: you have your base layer and all your ingredients. I sort of say to patients don’t use just one thing in isolation, try and add in the different layers of those four ‘P’s to the overall package to get the benefit.

Rebekah Shallcross: One of the key things that women said would help was to really do a lot of research yourself. And I’m not saying you should have to, but once women got to services that were set up to help women with vulvodynia then progress was made. I think predominantly because women felt that their pain was taken seriously, getting to specialist services was important, and also multi-disciplinary services were really important.

So there was quite a few papers that looked at multi-disciplinary groups that women could attend, so intervention groups, and they looked at things like psychotherapy to address the psychological consequences of having pain and also going through this system repeatedly, things like physiotherapy, things like mindfulness – they were all particularly helpful.

Those are quite individual treatments, they are targeting women. What I would like to see more of is ways of helping women challenge some of those unhelpful narratives that we talked about earlier. Those are some things that can be very distressing for women if they buy into them, but if we can challenge some of those things, move more towards that egalitarian discourse as opposed to ‘I’m a woman and therefore I have to provide sex for my male partner’ then those challenges might actually be quite helpful in terms of the distress that vulvodynia can cause.

Paul Evans: I mean you say ‘egalitarian discourse’, discourse would be quite good. Just people speaking to each other.

Dr Rebekah Shallcross: Yeah, opening up communication, absolutely. That is very difficult for women, I think, to talk about, because there’s such a taboo around women and sexuality, you know. It does take a lot of bravery, but from the women that I spoke to, their expectations about how people reacted – they thought that people would think that they were weird or that people would not really understand. But actually the women I spoke to who did speak to friends and family found that they were actually very accepting of it, and that in itself, as you say, opening up communication, was helpful.

Paul Evans: Going back to your first ‘P’, patient education. We talked about getting information off the internet; I’ve never heard of vulvodynia, I had to go on to Wikipedia last night to find out what it was. How do you increase the information, or the way of finding information?

David Nunns: There’s often too much on the internet and it is confusing. And that’s why I always go back to those four ‘P’s because the message is so confusing for a patient. In that patients can know about vulvodynia but what they really want to know is the treatments – where do I go to, and who do I go to? I think that will always be an ongoing battle with the internet and what’s available. We would always say through the Vulval Pain Society, because we know that many visitors don’t have a diagnosis, ‘you need to see a health professional’. We don’t want you don’t want to self-diagnose vulvodynia and you’ve got a skin problem.

The Vulval Pain Society was set up in ‘93 as an information support network for women with vulval pain. I set that up with a nurse in Manchester in ’93 with the aims of just providing some information because at the time there was nothing at all. Over the years we’ve increased our web presence and we’ve tried to be sensible and holistic about the condition, and we’ve certainly been able to be the group that health professionals refer to.

For the health professionals we’ve a slightly different tack really. We introduced into the training curricula of gynaecology and dermatology and genitourinary medicine doctors a mandatory teaching on vulval disease, which included vulvodynia. So for our gynaecologists of the future, who are seeing most if not many of these women, the curriculum in the past was quite poorly developed, it was probably one sentence. So we’ve changed that to include a proper assessment, history and detail on basic treatment for vulvodynia. So they have to do it basically, and when you make something mandatory it suddenly gives it a platform. There’s a need for them to learn about vulvodynia, which is a good thing I think.

Paul Evans: What advice would you give to a woman who thinks she has this?

David Nunns: The key thing for women who haven’t got a diagnosis who are experiencing vulval pain is they need to access a health professional who’s going to listen to them, take a history, examine them. They can go along to their health professional with a mention of vulvodynia and ask the health professional ‘do I have vulvodynia?’ as a simple question.

If they’re happy, if they’re satisfied with their care, that’s fine. If not then I think there needs to be a next step really. What we might call a clinical pathway, which is the journey for the patient. That service might be gynaecology service, it might be what we call a vulval clinic, which is a clinic that’s dedicated to vulval disease.

If a patient’s at the beginning of her journey, she’s been diagnosed with vulvodynia, then I think she needs to read as much as possible about the condition and look at those four ‘P’s. And this is difficult for some patients. They have to take self-management and take control of their own care plan, you might call it, because at the moment the current system is quite fragmented and disjointed. And that’s quite do-able I think for many patients, not all.

And I think for those women who’ve got vulvodynia and they’ve been living with the condition for many years, I think medicine’s changing very rapidly. You know I think about where we are now, where we were five years ago, ten years ago, there are a lot more treatment options out there, both medical and non-medical. Just keep reading and keep a look out really for new developments because there are new developments, things generally are getting better.

Paul Evans: So what you’re saying is ‘Something that didn’t work for you five or ten years ago, things have changed. Try again’?

David Nunns: Explore things again. The drug that might have been tried in the past, where the quality of life was worse on it than off it, may have changed. So the sister drug might be out now that might be better. That sister drug might be a cream rather than a tablet, so it’s less likely to give you side effects.

Sometimes you need to think outside the narrow focus and the medical model. Some of my patients have had tremendous improvement with psychological therapies and psychosexual input. It was never offered perhaps in the past, but the offer may be there now.

Physiotherapy, I think, has been an underused treatment in the past. Probably more or less non-existent ten years ago for this problem, less so five years ago, but now physiotherapists are very interested in this condition. So it’s just opening your eyes again and having a refresh really at what things you’ve tried and what you could try in the future.

Paul Evans: That’s Dr David Nunns, gynaecology consultant at Nottingham University Hospital. The address for the Vulval Pain Society is vulvalpainsociety.org.uk. I’ll just remind you that whilst we in Pain Concern believe the information and opinions on Airing Pain are accurate and sound, based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf.

Don’t forget that you can download all editions and transcripts of Airing Pain from Pain Concern’s website which is painconcern.org.uk. There you’ll find information and support for those of us living with chronic pain, our families and carers, and for healthcare professionals. There’s also information on how to order Pain Concern’s magazine, Pain Matters.

In the second of these two editions of Airing Pain supported by a grant from the Women’s Fund for Scotland, we’ll be exploring how the conditions of Interstitial cystitis, Painful Bladder Syndrome, impacts on the lives of women who have the condition.

Pat Brown: The symptoms were as if every step I took someone was stabbing me with a knife up my vagina, there’s no other way I can explain it.

Jennifer Hayes: All you can really do, because you need to be near a toilet and it’s so painful and you feel just generally so unwell, I sit on a hot water bottle and just read or watch telly.

Pat Brown: …. and then the pain radiated out from there. I couldn’t sit all, I was in pain all the time.

Paul Evans: Painful Bladder Syndrome, its effect on women’s lives, and how to manage the condition will be in the next edition of Airing Pain. That address for the Vulval Pain Society once again, it’s vulvalpainsociety.org.uk. Now, to end this edition, a bit of good news for those who think their doctors don’t listen to them!

Winston de Mello: I am proud to say that I have learnt more about vulvodynia from my patients than from my clinicians.

Contributors:

Dr Winston de Mello, Consultant in Anaesthesia and Pain Medicine, University Hospital of South Manchester
Dr Rebekah Shallcross, trainee clinical psychologist and a research associate at the University of Manchester
Dr David Nunns, gynaecology consultant at Nottingham City Hospital. He is a trustee of the Vulval Pain Society.

More information:

The Vulval Pain Society

From diagnosis difficulties to defining gender: the effects of Vulvodynia on women today

This edition has been funded by a grant from the Women’s Fund for Scotland.

Contributors:

Dr Winston de Mello, Consultant in Anaesthesia and Pain Medicine, University Hospital of South Manchester
Dr Rebekah Shallcross, trainee clinical psychologist and a research associate at the University of Manchester
Dr David Nunns, gynaecology consultant at Nottingham City Hospital. He is a trustee of the Vulval Pain Society.

More information:

The Vulval Pain Society

Patient and clinician perspectives on living with Sickle cell disease and the importance of a multidisciplinary approach

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This edition has been funded by donations from Pain Concern’s friends and supporters.

An estimated 15,000 people in the UK are living with Sickle Cell disease and at least 250,000 are carriers. Dr Elizabeth Rhodes explains the causes and symptoms of the genetic blood disorder, the areas where it is most prevalent and who is affected.

One such patient is Khadijat Jose, who describes her experiences growing up in Nigeria and why being a carrier of the disease is an advantage in countries with Malaria. For those with the condition however, each day can bring severe pain often requiring admission to hospital. Dr Oliver Seyfried highlights the life-limiting effects of this pain, especially on young people, and the challenges it poses in all spheres of life.

Self-management is therefore hugely important for those with Sickle Cell disease, whether the pain experienced is mild or severe. Paul discusses the different approaches taken by the Red Cell Pain Management team at St George’s Hospital with clinical psychologist Dr Jenna Love and specialist physiotherapist Rebecca McLoughlin. Both emphasize the importance of being able to tackle sickle cell pain from an emotional and psychological perspective as well as a physical one.

Issues covered in this programme include: Sickle cell disease, the multidisciplinary approach, young people, anaemia, bone pain, sharp pain, flare-ups, triggers, stress, relaxation, vascular necrosis, activity-rest cycle, psychology and mental health.

Paul Evans: This is Airing Pain, a programme brought to you by Pain Concern, the UK charity providing information and support for those of us living with pain and for healthcare professionals. I’m Paul Evans, and this edition has been funded by donations from Pain Concern’s friends and supporters.

Khadijat Jose: There was one time I went to North Wales and I wanted to climb Snowdonia, and I told them that I couldn’t. And then they said ‘Why? Why can’t you climb Snowdonia mountain? C’mon it’s just a thousand/ eight hundred and something metres’ and I said I couldn’t that I had a condition called sickle cell disease.

Dr Elizabeth Rhodes: Sickle cell disease is an inherited disorder, so it’s a disease or disorder that people are born with. Basically your haemoglobin structure is different to what it should be when you’re born, and this means that your red blood cells don’t work in the same way. They don’t live as long and so you’re often very anaemic.

Dr Oliver Seyfried: I don’t think there’s a condition that quite creates such suffering from cradle to grave as sickle cell disease.

Paul Evans: It’s very difficult to assess the number of people who live with sickle cell disorder in the UK. But based on available data, the Sickle Cell Society estimate that there are around 15,000 people living with the it in the UK, and there are at least 250,000 carriers.

Sickle cell disease is a disorder of the blood. Dr Elizabeth Rhodes is a consultant haematologist at St. George’s Hospital in London. She specialises in looking after people with sickle cell disease.

Dr Elizabeth Rhodes: Within your blood, you’ve got white blood cells that fight infection; platelets that are the small sticky cells that make sure you don’t bleed or clot too much if you’ve got the right number; and then red blood cells carry the oxygen and the iron around. So they take the oxygen to your tissues that need oxygen.

Paul Evans: So if they’re not functioning correctly what happens?

Dr Elizabeth Rhodes: So what happens in sickle cell is that they don’t live for very long, they get destroyed very early. So a normal red blood cell will live for about 120 days, about three months, and in sickle cell disease it can be as short as two weeks. And so you get all sort of the broken down bits of red blood cell in your blood, and also the red blood cells are a funny shape. And so they don’t work as well and they get a bit stuck, and your blood flow’s quite sticky. So what happens is you bone marrow, which is the factory that makes blood, is working many many times harder than it might do otherwise. So you’re always producing red blood cells to carry enough oxygen around, and then your body has to process and dispose of the bits that are broken down as well, so you pass that out through your kidneys and your feces as well.

Paul Evans: And what does it mean to the patient?

Dr Elizabeth Rhodes: What they often notice is they’re anaemic, so they feel quite tired or short of breath at certain times. But the main problem that patients with sickle cell disease get is they get problems with pain. And that’s probably because the blood flow is so disrupted and those blood cells don’t work the blood is stickier, you get less oxygen delivered to the tissues that need it, particularly in bones, and so patients can experience very very severe at times episodes of pain that sometimes require them to go into hospital for treatment.

Paul Evans: So who gets it?

Dr Elizabeth Rhodes: You inherit it so you will need to have inherited two genes that don’t work properly and you’ve taken one from your mother and one from your father. And we see it mostly in patients that have got a family background from western Africa or the Caribbean, and it’s the geographical areas actually where malaria is most prevalent. In the UK patients tend to be centred in the big cities, so London and Birmingham, but as, y’know, people move and jobs move and universities move and lives change we’re seeing it more and more all around the UK.

Paul Evans: Consultant haematologist Dr Elizabeth Rhodes. Now one of those areas in West Africa where malaria is prevalent is Nigeria. That’s where Khadijat Jose is from. She’s currently a PhD student at Cardiff University and she has sickle cell disease.

Khadijat Jose: I got the sickle genes from my parents who are carriers. I fall sick quite a lot, it causes pain in my bones, maybe if I don’t have good flow. Because sickle cell disease you probably won’t have good flow of your cells because your cells are kind of like the letter ‘C’ and they don’t flow properly in your veins, and sometimes they get stuck and that causes episodes of pain. So for me that happens when I’m stressed out, or I’m cold, or I have malaria, which happens to me quite a lot when I’m in Nigeria. So I fall sick, I’m in a lot of pain for days or weeks.

Paul Evans: I was going to ask how long you’ve had this, you’ve had this from birth, but when did it become an issue?

Khadijat Jose: According to my Mum, I fell sick the first time when I was about 3 months old. And while I was growing up as far as I remember I used to go to the hospital a lot – I was always in pain from when I was aged 4 to 13 or something. Then it got a bit better. When I was a child it was more intense for me.

Paul Evans: I’m interested in that you said that maybe it showed itself when you were 3 months old, now you won’t remember this but what would your mother remember of that?

Khadijat Jose: They thought that my Dad was AA – that’s a genotype – and my Mum was a carrier of sickle cell, meaning that they were not going to have a child who had sickle cell disease. As far as they [knew] they would only have a child that was a carrier. But they genetic tests were done wrong for my father: he was a carrier as well. So my Mum’s side when they found out that I had sickle cell they were really shocked about it cause they weren’t expecting something like that to happen.

She just said I used to fall sick quite a lot, and, well, in school I know couldn’t do much of the physical activities. If you’re a carrier you probably would need to take a few medicines, maybe folic acid, but you can be a carrier and you don’t need any medical care because the sickle gene itself was basically a way to be resistant to malaria. So it’s actually a good thing! Because the genotypes, we have AA and AS – the S was kind of like the genetic mutation of the body in Africa to fight malaria. So I you have AS genotype then you’re fine, you’re basically resistant to malaria. But if you are AA, which is when you don’t have any sickle gene, you’re very healthy but sometimes you fall sick when mosquitoes bite you. But otherwise you’re fine. But then if you are sickle cell you have no protection from malaria and then you fall sick all the time. So being AS is the ideal thing, but not being sickle cell.

Paul Evans Let me get that right, so if you’re a carrier, you have some sort of immunity against malaria?

Khadijat Jose: Yes you do.

Paul Evans: Khadijat Jose. Now St. George’s Hospital, one of the largest in South West London, established a sickle cell pain management programme just a few years ago. The team includes consultant haematologist Dr Elizabeth Rhodes who we heard earlier, a psychologist, a physiotherapist and Dr Oliver Seyfried a consultant in pain medicine and anaesthesia.

Dr Oliver Seyfried: For people who have the serious version of this disease – there is a gradation it’s not quite heterogeneic in it’s make up, there are people who have it really really badly and there are people who don’t have it so badly. Even if you don’t have it badly it can really interrupt your school life and your work life, but if you have it badly you are in, ‘agony’ iss not too bad a word on a daily basis from morning ‘til night. And so a serious situation that needs addressing, and people need to realise that when they meet someone with sickle cell disease not only are they holding down their job, bringing up their children, interacting with society in different ways, they’re living with this on a day-to-day basis. Now I don’t know about you but when I get a tooth ache I become pretty useless, but my toothache has an end – either with antibiotics or the dentist. Sickle cell disease is incurable, it doesn’t have an end. And managing it as best we can and enabling people to function is our drive.

Khadijat Jose: The pain feels like someone taking a nail and hitting you with a hammer, with a nail and a hammer like you know when they crucify someone basically [laughter] that’s how I feel. I’m not sure if that’s the general thought[s] about it but that’s how I feel when I’m having pain. Like someone’s hitting me with a hammer.

Paul Evans: So it’s a sharp pain?
Khadijat Jose: It’s a sharp pain, yes.

Paul Evans: And that’s continuous?

Khadijat Jose: It’s continuous, yes. It’s continuous for days, but once I have pain relief then that helps to take it away. And sometimes it comes back but I need to completely clear the flow in my veins before I can say ‘I am in no pain at all’, so it’s not just about pain relief for me.

Paul Evans: So when you have an episode how long does that last?

Khadijat Jose: My worst episode was 3 weeks but on average one week, or a few days. If I go to the hospital when I’m having a crisis then I am connected to intravenous fluids. So that helps to hydrate my body, which helps proper flow of the cells in the veins that are probably stuck.

Paul Evans: You go into hospital for every episode?

Khadijat Jose: No, I don’t go to the hospital for every episode. There are some episodes that I can manage by myself at home. It depends how bad the pain is for me, then I decide [whether or not] to go to hospital.

Paul Evans: Do you get any warning when these episodes are going to come?

Khadijat Jose: Sometimes I get a warning, but sometimes I don’t know that anything is going to happen – I just wake up in the morning and I’m in pain.

Dr Oliver Seyfried: Sickle cell pain comes in all sorts of formats. The common ones as we mentioned are the bones. And when a patient feels sickle cell pain they feel it in their lower back, their arms, their legs, their chest and their abdomen. The fact that it affects their lungs it doesn’t tend to be painful, but it can cause all sorts of disability: pulmonary hypertension, high blood pressure in the blood circulation of the lungs is something that [also occurs]. That’s not typically pain but it has serious [consequences] on how people can go and live their lives. They get short of breath up half a flight of stairs, and when you’re a young person that’s very limiting.

Dr Elizabeth Rhodes: Some people actually never get any pain or get very, very rare episodes of pain. Some people manage their pain, if they’re moderate pains, at home, and we try and educate patients as to when that’s a good thing to do and how to manage it, and to support them doing that, but also making sure they know when they should be coming into hospital if there’s – you know – the pain is too severe or there’s any other concerns, if there’s sort of, sickle affecting lungs and things like that, or infection.

So, some people are fine, some people have every day, or chronic, pain that doesn’t need an inpatient admission. So it’s trying to identify what the pain is, what the triggers are, what makes it worse, as well, so we know, for example, that people who are very stressed at various times; you might have other things going on in your life that makes pain difficult to manage. When it’s difficult to deal with pain, that can make the pain worse. If [you’ve] got a busy job or if you’re looking after children, if – you know – Wednesdays are always a busy [day], so trying to identify things like that, trying to identify if mood plays a role, how we can help with that – you know – pain makes mood difficult, mood makes pain difficult. And looking at things like relaxation techniques and distraction and all those other things that can work together, and making sure that the medication that you’re taking is the right one for that situation as well, so we’re trying to get sort of the best pain relief with the least amount of medicine, really.

Paul Evans: So self-management is important as in any chronic pain condition.

Dr Elizabeth Rhodes: Absolutely.

Paul Evans: They talk about, or you talk about, or we talk about the pain cycle where the condition makes you depressed or anxious – this, that, and the other – that feeds back into the pain so it’s a spiral that just keeps going and going.

Dr Elizabeth Rhodes: That’s definitely one role, but also the different thing, probably, with sickle cell disease is because there are these crises going on, so making sure that also you’re safe and it’s not affecting you in such a way that it does need a doctor and medicine in hospital.

Dr Oliver Seyfried: Part of the syndrome of sickle cell is what’s called a vascular necrosis, and that’s where the sickle cell blood shapes cause blockage and inflammation to the blood vessels that travel to the bone, and it causes the bone to collapse. It does occur most commonly in the hips, apart from the spleen which is an organ in the tummy, the hips are the next most commonly destroyed organ by sickle cell disease. The knees are partially affected, but to a much lesser extent, and the shoulders perhaps more than the knees but less than the hips. The vertebrae, the bones that make up the back, they also have a pretty poor blood supply and they can collapse, and you can imagine if a bone collapses it can have profound impacts on function and pain.

Paul Evans: Can that sort of damage be prevented?

Dr Oliver Seyfried: From the bone pain point of view – again, it affects different types of the disease in a different way – we know that fifty percent of people with the homozygous variant, which means they’ve got the serious [variation] of haemoglobin SS, at thirty five years of age fifty percent of people will have their hips severely affected by a vascular necrosis.

Can it be prevented? Well yes, if spotted and diagnosed early, there is a small place for prophylaxis, some surgical operations are available to prevent the head of the femur, the hip, from breaking down. Otherwise, you’re looking at good physiotherapy, bed rest if needed, to allow, perhaps, some of the bone to regenerate a little bit. But no, prophylaxis is largely absent.

Paul Evans: Dr Oliver Seyfried of St George’s Hospital London’s multi-disciplinary Red Cell Pain Management team. And the term ‘prophylaxis’ means prevention.

Two other members of the team are clinical psychologist Dr Jenna Love and specialist physiotherapist, Rebecca McLoughlin. Rebecca first.

Rebecca McLoughlin: Within a really good multi-discipline team there’s a huge amount of overlap with roles, but then there are aspects of the roles that each profession will have more expertise and more knowledge about. So a physiotherapist working in pain management might mainly focus on the impact of pain on movement and activity, and physical function, and understanding of pain mechanisms, the way that pain influences our body and our movement and our activity.

Dr Jenna Love: Where the psychologist and the team tends to focus more on the impact that pain will have on moods and emotion, might be working with people exploring particularly unhelpful thoughts that they have about pain or their condition, thinking about communication and the impact of pain on relationships and families. And I think what’s really nice about Rebecca and I is that we’re able to be in the same room at the same time, a lot of the time with the people that we work with. And so you’ll hear that the things dovetail together really nicely. So Rebecca, for example, might be talking to somebody about increasing activity or movement, but what she’ll also be doing is helping them to explore what thoughts and beliefs are getting in the way of them doing that activity. So we’re very much always talking about physical and psychological in a very integrative way, so if we’re able to identify what the beliefs are that stop them making that change, then we can help them to change those beliefs to more helpful ideas. So it really is a very integrated way of working.

Paul Evans: So, for instance, just telling somebody that they need to do more exercise is ignoring the fact that it’s not just the condition that might stop them doing the exercise, but it’s the thought processes: “What happens if…?”, “Why…?”

Rebecca McLoughlin: Yeah, yeah absolutely. And those things are always unique to the individual. So a population of people with the same condition may have very different beliefs about what that condition means in terms of their ability to move, or the consequence of movement, or the consequence of activity. So part of our role is to really unpick, for the individual, what does having this condition mean and what impact does that have on the choices you feel able to make, on the beliefs that you have, on the thoughts you have about, say, movement and activity.

Dr Jenna Love: We focus quite a lot on people with chronic pain; so thinking about, not necessarily the type of pain that might bring them into hospital with a crisis, but the kind of everyday, or regular, pain that is there a lot of the time. And often that’s a sort of pain that people just struggle with at home. And that’s quite an expectation, “Well you have sickle, you will have pain”. Often, if people do a lot of movement they might find that that flairs up their pain significantly, so they get worried about doing movements, and think, “Oh, I better not do that because I’ve got to be able to pick the children up later.” So they often limit movement, and then of course the impact of that is that they become, you know, lose a bit of fitness and become a little bit deconditioned, so that if they then do more activity again it can increase pain. So people can get into really unhelpful patterns with activity, very understandably, where it actually feels quite difficult to do activity and movement.

Paul Evans: You call that “the cycle of pain”, don’t you?

Dr Jenna Love: Yeah, quite often, or thinking – people talk about different words, so “boom and bust of activity”, or…

Dr Jenna Love and Rebecca McCloughlin: “Over and underactivity”

Rebecca McCloughlin: And I think all of those patterns, as Jenna said, are very understandable; it makes sense in the short term that if something feels painful and if something has a really difficult consequence, it make sense to avoid it. But if we have a condition where lots of things aggravate pain and lots of things have an unpleasant consequence and we start avoiding them all, quality of life gets significantly reduced and then we start to hit more and more problems.

Paul Evans: The “boom and bust” that you mentioned, that’s when you’re feeling good, when you’re feeling well, you try and do everything, and you bust.

Rebecca McCloughlin: Yeah, you pay for it.

Paul Evans: And you go further back even, sometimes.

Dr Jenna Love: Absolutely. And one of the things that we’ve noticed is that sometimes, because people with sickle cell have that history of regular crises, that what can happen is, again, their thoughts get in the way and they think, “Ah, pain’s increasing, does this mean a crisis is coming? I better rush around, get everything done, because who knows what’s going to happen. Might I end up in hospital?” So I think the “boom and bust” can even be exacerbated in sickle cell because there is that history of, perhaps, needing to be hospitalised with pain that can mean that, actually, the pressure to get things done is quite significant.

Paul Evans: How do people feel when they’re told that “a psychologist is going to manage your pain”?

Dr Jenna Love: There’s a psychologist also based in our service called Dr Penelope Cream, and she’s been working with the sickle cell patients for about four, maybe five, years. One of the very helpful things she’s done is help to normalise the sense of seeing a psychologist, and actually we’ve not come across as much resistance to psychology as we might have anticipated. There’s always the people we don’t see, of course, but I think we’re very, very careful to explain that we’re never referring to a psychologist because we don’t believe the person’s pain, because we think that they’re – it’s all in their mind. We are very much of the idea that psychology is important because pain affects our thoughts and our emotions, and it can lead to a whole host of really difficult psychological conditions. It’s very understandable why people with very significant ongoing pain can start to feel anxious, start to feel worried about doing things like activity, that they can start to feel low in mood, can start to feel angry, and there’s a lot about sickle cell about, “why me?”, and the injustice of the condition as well. So I think we help to give a clear rationale for why psychology might be involved, in that it’s about helping you cope with the emotional impact of the condition and nothing to do with being seen as – in any way that they’re not coping in a helpful way.

Paul Evans: I suppose a lot of that is down to education as well. I mean, getting people to understand that pain is a biopsychosocial thing.

Rebecca McCloughlin: Yeah, and I think that’s one of the really important reasons why we work within a multidisciplinary team, and that we work mainly in the outpatient setting, but that our team spreads across inpatient and outpatient settings. And that some of that education comes – kind of filters down from all sources and it’s really about trying to help people to see a very physical condition like sickle cell that’s often traditionally been treated very medically isn’t just going to have a medical, physical impact; it is going to have that broader impact. And our consultants like Dr Rhodes do a huge amount in terms of helping to educate patients about the broader impact of pain and hooking them in to more biopsychosocial founded interventions.

Paul Evans: That’s clinical psychologist Dr Jenna Love. Dr Elizabeth Rhodes again.

Dr Elizabeth Rhodes: What we should be doing in the UK is identifying all children born with sickle cell disease or sickle cell anaemia before they’re born, actually. So we’ve managed to educate the parents who are at risk and then making sure we make that diagnosis at birth. So from the very beginning you know that you get to meet your sickle cell team and you get to see your paediatric haematologist, so the haematology doctor that’s going to be looking after your child, you know, at sort of three months of age, and so we start that education process right at the very beginning. And then it’s really key to remember to do that as that child gets older, so as they take on their own condition, and as they come into adulthood that we don’t just assume that it’s all remembered from when their parents were told.

We run workshops where we educate patients on their disease but also on their pain and different types of self-management and hospital management as well.

Paul Evans: For somebody who’s just found that they have sickle cell disease, what advice would you give?

Dr Elizabeth Rhodes: One important thing is to make sure that you are known to a specialist centre that looks after – so, you know, either via either the GP or something like that, to get yourself referred to the hospital. That doesn’t mean you have to spend all your time in hospital, but it’s important that we see you as an outpatient as well, so we try and see patients at least once a year, some patients need more, and then we can make sure that all the complications are being looked for and managed. And therefore, you also get into the system where we’ve got the nursing support and psychology support and everything else you needed if you need it. So trying to make sure that you’re in with a hospital team that’s looking after sickle cell disease is really important cause they’ll have the access to the other support systems that you’ll need as well.

Paul Evans: So I guess in that it’s a genetic illness, there’s a good start for you that you know who will get or who might get it.

Dr Elizabeth Rhodes: Yes

Paul Evans: And getting that help into the family in one generation might pass all the way through.

Dr Elizabeth Rhodes: Yes. So it’s picking up who’s a carrier, because people who are carriers usually have no symptoms, so it’s trying to make sure we identify those people who are carriers so that – and we usually do that in pregnancy so then they know that they’re at risk of having a baby who might be affected. And then once we know that that child’s affected, throughout their life we will talk about partner testing and genetics as well.

Khadijat Jose : For me being not just a carrier but I have sickle cell disease, it affects my relationships a lot, because it’s not just about meeting and liking someone, I have to ask, “What’s your genotype?”, because you can’t be a carrier, you have to be someone who doesn’t have the sickly genotype at all.

Paul Evans: Khadijat Jose. I mentioned at the start of this programme that exact figures for the instance of sickle cell disease were hard to come by. Does this mean that there’s been a lack of interest or awareness by the medical profession, or indeed by society itself?

Dr Oliver Seyfried.

Dr Oliver Seyfried: The life expectancy of sickle cell disease in the early part of last century was teens; if you survived infancy, you were lucky to make young adulthood. We now, through medical and social advances – longevity is almost normalised, so we can now concentrate on how we manage this. There’s another side of it, I think, that people expect sickle cell disease to come with pain. And so you say to your patient, “You’ve got sickle cell disease, are you in pain?”, they say, “Yes”, you go, “Right you are”; it’s almost expected that people live with it, and I think maybe that’s the attitude that’s changing. Don’t also forget that, rightly or wrongly, people in this country, in the United Kingdom, with sickle cell disease, either black or from the Indian subcontinent are part of an ethnic minority and with that comes all sort of social issues that, I hope, are starting to dispel, but may have suffered at the hands of being an ethnic minority and all that comes with that.

Paul Evans: So, it’s education to the communities themselves, to the potential patients, to the carriers.

Dr Oliver Seyfried: Absolutely. I meet many patients who could be carriers of the disease, and you ask them, “Do you have sickle cell disease or sickle cell trait?”, and they look at you blankly. It’s got to be spread; people have to know, I think on a general level, especially in the black and Indian subcontinent community about the thalassemias as well. This is another type of haemoglobin disorder that’s important, that can create pain. They’ve got to be aware because it does affect them and their family if their unlucky; if two people with sickle cell trait meet, have a child, one in four of those children will have this serious version of sickle cell disease. And NHS England are running the sickle cell and beta thalassemia programme with a view to getting people prior to conception, through pregnancy, and in to get early diagnosis in there because early diagnosis might lead to earlier intervention, and a healthier person throughout their life.

Paul Evans: Dr Oliver Seyfried, consultant anaesthetist at St. George’s hospital, London. He mentioned the national sickle cell screening programme in the UK. Dr Elizabeth Rhodes again.

Dr Elizabeth Rhodes: If you’re in an area of high prevalence, so for example if you’re pregnant in central London, we’ll test all women, and then if you’re affected we’ll offer to test the father of the baby. If you’re in an area of low prevalence, so perhaps where sickle cell isn’t as very common, we do a family origin questionnaire and we look at your full blood count; so to look to see if you’re anaemic, and if there’s some suggestion that you might need screening we’ll screen you then as well. So we should be trying to pick up everyone in pregnancy.

Paul Evans: Are there specialist centres throughout the UK?

Dr Elizabeth Rhodes: Yeah. Throughout the UK but not in, sort of, absolutely every area, so again the areas of low prevalence may not have a specialist centre, but they should be able to link to a specialist centre. There are several in London, Manchester, and Birmingham.

Paul Evans: Dr Elizabeth Rhodes, consultant Haematologist at St George’s in London.

You can find more information about sickle cell disease at the Sickle Cell Society website, and the address is http://sicklecellsociety.org

I’ll just remind you that whilst we in Pain Concern believe the information and opinions on Airing Pain are accurate and sound based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf. Don’t forget that you can download all editions and transcripts of Airing Pain from Pain Concern’s website which is www.painconcern.org.uk . There you’ll find information and support for those of us with chronic pain, our families and carers, and for healthcare professionals. There’s also information on how to order Pain Concern’s magazine, Pain Matters.

Last words to Khadijat Jose.

Khadijat Jose : You don’t want to meet someone and then, you know, you are hitting it off and next thing you’re asking, “what’s your genotype?”, it’s kind of weird. But it’s something that has to be done.

Paul Evans: And, pardon me if I’m prying, have you done that with people?

Khadijat Jose: Oh my god, several times. All my boyfriends I’ve asked, “what’s your genotype?”, and to be honest I think that has been a good thing for me cause I have a son now, and maybe if I didn’t ask or we didn’t do tests then I would have a son who is having the sickle cell disease just like me. Because if I marry someone who’s a carrier then my child has a seventy five percent probability of being someone with a sickle cell disease, and I don’t want to have to put my child through what I’m going through. I want a child that will be healthy and happy to do whatever he wants to do, whenever he wants to – everything. So yeah, it’s quite important you ask those questions.

Paul Evans: So is your son a carrier?

Khadijat Jose: My son is a carrier. All my children are going to be carriers.

Paul Evans: But he doesn’t have sickle cell disease.

Khadijat Jose: But he doesn’t have sickle cell disease. So he’s just a carrier.

Paul Evans: So you’ll be passing that information on to him.

Khadijat Jose: Yes.

Paul Evans: And that affects the whole of his life to come as well.

Khadijat Jose: Yes, that does. It’s quite important that we all educate ourselves on this issue. If you have sickle cell disease or you’re just a carrier, it’s important that they know and when they’re dealing with their life issues, relationships, that they also ask those questions, because it would be nice if a lot more people knew about this condition, and then that way, maybe, there’ll be a little more empathy as well.

Paul Evans: Empathy not sympathy?

Khadijat Jose: Empathy.

Contributors:

Dr Elizabeth Rhodes, consultant haematologist at St. George’s Hospital in London
Khadijat Jose, PhD student at Cardiff University
Dr Oliver Seyfried, consultant in pain medicine and anaesthesia at St. George’s Hospital in London
Dr Jenna Love, clinical psychologist at St George’s Hospital in London
Rebecca McLoughlin, specialist physiotherapist at St George’s Hospital in London.

More information:

For more information about Sickle Cell disease visit the Sickle Cell Society website:
http://sicklecellsociety.org
For more information on the National Sickle Cell Screening Programme and parent education in England visit : https://phescreening.blog.gov.uk/category/sct/.

Patient and clinician perspectives on living with Sickle Cell disease and the importance of a multidisciplinary approach

This edition has been funded by donations from Pain Concern’s friends and supporters.

Self-management is therefore hugely important for those with Sickle cell disease, whether the pain experienced is mild or severe. Paul discusses the different approaches taken by the Red Cell Pain Management team at St George’s Hospital with clinical psychologist Dr Jenna Love and specialist physiotherapist Rebecca McLoughlin. Both emphasize the importance of being able to tackle sickle cell pain from an emotional and psychological perspective as well as a physical one.

Thanks to progress in medical training and increased awareness, the quality of life for Sickle Cell patients continues to improve. Dr Oliver Seyried and Dr Jenna Love mention the national sickle cell screening programme and parent education, on which more information can be found here: https://phescreening.blog.gov.uk/category/sct/

Contributors:

Dr Elizabeth Rhodes, Consultant Haematologist at St. George’s Hospital in London
Khadijat Jose, PhD student at Cardiff University
Dr Oliver Seyfried, Consultant in Pain Medicine and Anaesthesia at St. George’s Hospital in London
Dr Jenna Love, Clinical Psychologist at St George’s Hospital in London
Rebecca McLoughlin, Specialist Physiotherapist at St George’s Hospital in London.

More information:

The Sickle Cell Society.

Pain Concern Research Workshop – supporting people with chronic pain develop self management approaches

When:
14/12/2016 at 01:00pm

Pain Concern invite you to join them for an afternoon workshop exploring new ways to support people with chronic pain develop approaches to improved self management.

Pain Concern have recently received funding to undertake a pilot research project of a ‘navigator tool’ which could be used a by a number of primary healthcare professionals during their consultation with people with chronic pain.

This is a two year project which will test the tool at various primary care sites. However, prior to the pilot study Pain Concern intend to hold a consultation event where they present the navigator tool in it’s draft form and get feedback from both primary healthcare professionals (a mixture of GPs, physiotherapists, practice nurses and pharmacists) and people living with chronic pain.

This workshop will involve trying the new navigator tool within several small groups and reporting back to the wider team. Refreshments and a light lunch will be provided at the beginning.

Places are free but limited. To book your space please contact shonasinclair@work-4-me.co.uk.

For more information, please contact:
Shona Sinclair on shonasinclair@work-4-me.co.uk

Pain Concern’s collaboration with Greater Glasgow and Clyde (GGC) NHS was a winner last night at the Alliance Scotland’s Self Management Awards. The project won in the Self Management Supporting Health and Social Care Partnership of the Year category.

The pilot project nominated for the award ‘West Dunbartonshire Chronic Pain Primary Care Service Development Project’ sought to find a new way to provide education sessions on pain to the public. Pain Concern and GGC NHS have now expanded the project to locations across the Greater Glasgow and Clyde area.

The pain education session is for anyone who has had pain for more than 12 weeks and people can self-refer or be referred by their GP, physiotherapist or other healthcare or social care professional. The sessions aim to give participants a better understanding of their pain to help them to manage their condition more effectively in the long term.

You can find out more about the Pain Education Session and how to book a place h e re and see the full list of award winners here.

Following our shoe shopping tips might help you to reduce or prevent foot pain

1. Try before you buy

Avoid buying online unless you’ve tried on in store first or you’ve checked the site has a good returns policy.

2. Rule of thumb

You should have a thumb’s width between the end of the shoe and your toes.

3. Wriggle room

The toe of the shoe should be deep enough that you can comfortably wriggle your toes around.

4. What about width?

Some retailers measure and fit shoes by width as well as length. If either side of the ball of your foot is pressed hard against the side of the shoe, look for a wider size or a different model.

5. How high?

For shoes you’ll wear regularly, aim for heels no more than two finger widths high. Higher heels are ok occasionally, but just for a few hours.

6. Materials matter

Go for breathable, temperature-regulating materials – leather, Gore-Tex or mesh on sports shoes.

7. Fastenings

Laces, buckles, Velcro, elasticated… whatever the fastening, make sure the shoe fits snugly and securely over the top of the foot and back of the ankle.

8. Get a grip

A good, grippy outer sole helps maintain balance and reduce the risk of strain or injury from slipping.

Why pain is a matter of life and death, the struggle for diagnosis and challenging misperceptions of palliative care

This edition is funded by Grünenthal.

Around 20 per cent of Europe’s adult population live with chronic pain and the consequences for individuals and society are devastating. In this edition of Airing Pain we head to the Societal Impact of Pain meeting in Brussels to hear from the patients, healthcare professionals and policy makers coming together to improve the lives of people in pain across the continent.

Dr Chris Wells explains why pain management is a matter of life and death and how to put pain higher up the political agenda. MEP Theresa Griffin takes up the baton with a call to make the workplace accessible to those living with pain.

Jane Moejlink describes the challenges of getting a diagnosis for interstitial cystitis and Sjögren’s syndrome in the face of sceptical doctors and the language barrier, while Professor Ilora Finlay makes the case for a different view of palliative care. Plus: an update from Ireland and bursting balloons to raise awareness.

Issues covered in this programme include: Misconceptions, palliative care, policy, educating healthcare professionals, epidemiology of pain, funding of pain services, accessibility in the workplace, GP, neuropathic pain, raising awareness, chronic pain as a condition in its own right, patient voice and cancer.

Contributors:

Dr Chris Wells, President of the European Pain Federation (EFIC®)
Jane Meijlink, Chairman of the International Painful Bladder Foundation
Dr Martin Johnson, Chronic Pain Lead at the Royal College of General Practitioners and Co-Chair of the Chronic Pain Policy Coalition
Ilora Finlay, Professor of Palliative Medicine, Cardiff University
John Lindsay, Chairperson, Chronic Pain Ireland
Joop van Griensven, President, Pain Alliance Europe
Theresa Griffin, MEP for the North West of England.

More information:

The Societal Impact of Pain Platform.

Why pain is a matter of life and death, the struggle for diagnosis and challenging misperceptions of palliative care

To listen to this programme, please click here.

Prefer a PDF?Download

Around 20 per cent of Europe’s adult population live with chronic pain and the consequences for individuals and society are devastating. In this edition of Airing Pain we head to the Societal Impact of Pain meeting in Brussels to hear from the patients, healthcare professionals and policy makers coming together to improve the lives of people in pain across the continent.

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

Now at the time of recording this edition of Airing Pain, that’s the end of June 2016, the people of the United Kingdom have just voted to leave the European Union. That doesn’t get away from the fact, however, that around 20 per cent of Europe’s adult population, that’s 80 million people, suffer from chronic pain, and this costs, directly and indirectly, one and a half to three per cent of Europe’s total GDP – that’s gross domestic product.

Those are the stark statistics presented to delegates at the European Pain Federation’s Societal Impact of Pain Symposium, or SIP, held in Brussels in May of 2016. It’s the sixth such symposium to discuss the socioeconomic impact of pain for individuals and societies. And it went under the banner headline Time for Action, calling for the prioritisation of pain as a disease in its own right in the EU health programme. It brought together over 200 pain experts, patient representatives and policy makers representing 28 European countries.

Back in 2011 the symposium launched its roadmap for action at the European Parliament, and initiative to make pain more visible at the level of national and international policy makers. Tom Green, editor of Pain Concern’s magazine Pain Matters, was there to meet delegates, starting with Dr Chris Wells, who is a pain relief specialist in Liverpool. He’s also president of the European Pain Federation, EFIC.

Dr Chris Wells: The roadmap to action is really an assessment of how we’re doing. We take policy decisions that we think are important and we identified that five years ago. So we look at the roadmap and we can see in some countries some things are being instituted and, unfortunately, in other countries very little has been instituted. But at least it flags up where there are weaknesses so we can now try and mover forward to addressing that, which is something that we’re going to do.

To all people, they just think that pain is a nuisance and usually people have had pain, so they had a toothache and it was upsetting but it went away the next day. So they don’t really understand the misery of chronic pain, Politicians have no idea about the cost to society. They are beginning to be aware of the problem in restriction of quality of life. Quantity of life is a new issue and we’ve now got data to show people with chronic pain have a reduction in quantity of life – they die sooner. And the corollary of that is also information that shows us that if their pain is adequately treated, for instance with a non-steroidal, their quality of life and their quantity of life both improve. And this is hugely important, so people can live longer in a more healthy way.

Tom Green: How much life is being lost, how much life could people expect to lose if they have untreated chronic pain?

Wells: The data is not good enough to really put that across the whole population of, in Europe a hundred million chronic pain patients. But we just know that some are losing their lives through immobility, through despair, through problems with their treatments that they have and just being ignored. I started doing cancer pain work and there’s no question to me, you can see people that fought and fought against their cancer and did ever so well, and eventually there came a time when they just thought, ‘no, the pain is too much. What’s the point in going on living?’ And I could see people just quietly giving up and saying ‘this is it’. So we’ve not been able to prove that one yet, but we all know it as clinicians.

But the data that we have on disability from pain, for instance, in osteoarthritis, that is very solid.

Green: So that’s a strong message to take to the European Parliament and also to the UK national parliament.

Wells: We can’t afford to ignore pain, although the politicians are frightened because we go along and we say we want more of this, we want more of that and they understand that there isn’t more. However, if we can show that we want more of this and it saves money in the long term, then I think we have got an important message and that’s what I think we should be doing.

There’s no point in us doctors just being shroud-wavers and saying our patients need this, because we’ve all got vested interests. Even there’s no point in patients just saying that, but we can say, look, this is the cost, we could reduce that. And we need to look at better treatment but as a specialist coming out here, better prevention, better education for doctors and better education for patients. And that’s one of EFICs strong points, education, that’s what we do.

Green: How close do you think we are to really transforming education for doctors, and perhaps for the general public as well?

Wells: Well it’s improving and you can see that from the roadmap. And, again, in the UK now one third of medical schools use pain in the curriculum for medical students, and that’s good. Two years ago I think it was none. So if we’re rolling that out and in another six years it’s all of them, fantastic. Then we’re going to have doctors in the future who understand more about pain.

Green: And from the patient’s point of view what does that mean?

Wells: From the patient’s point of view that means that hopefully they can see their GP and get a sensible answer. And I think that, we’ve already had discussions on that, it’s not just me, it’s not just the patient groups, the GPs accept, first of all, they don’t have the time; secondly, they don’t have the experience to teach things like self management, they don’t know how to do that.

And this is by far the best SIP we’ve had because we’ve got much more patient involvement and much more MEP involvement, which of course matters. There is no point in healthcare professionals sitting around talking about what wonderful ideas we have. It’ll never happen unless we get the patients and the politicians on board and I think we truly have. So that’s why it’s very exciting to me.

Jane Moejlink: I’m Jane Moejlink and I’m chairman of the International Painful Bladder Foundation, which is for patients with interstitial cystitis, which is today mainly known as bladder pain syndrome and we cover all the comorbidities, chronic pelvic pain and everything related to that.

I’m here as a patient advocate and by profession I was a translator, writer and editor, and I’ve been able to use that now in the voluntary work for the patients. So I try to write a kind of report, not only for patients, patients can understand, but it’s also read by various health professionals.

Green: So what will you be reporting back from this meeting?

Moejlink: There’s been an awful lot of talk about what should be done but I’m still waiting to see something actually being done. And I must say I was rather concerned to see the European Parliament does not have a section dedicated to health, that health is hidden somewhere under environment, which sounds utterly ridiculous today. It’s vital that we ensure that people are healthy because our whole system, certainly in Western Europe, depends on people working paying into the system before they can take out, so you’ve got to have a kind of balance between the two. Because if you’ve got too many sick people and they’re not paying taxes into the system and you’ve got a lot of people, far more people, taking out, the economy is simply going to crash. So I would have thought it was a priority to have health as a very important section.

Green: So you’re a passionate advocate and that comes partly from personal experience?

Moejlink: Yes, it certainly does, because I’m a patient with interstitial cystitis, but I also have Sjögren’s syndrome and many other comorbidities, but it took me 29 years to get a diagnosis of interstitial cystitis and actually almost 40 years to get the right diagnosis of Sjögren’s syndrome.

I got first of all the diagnosis for IC and I then discovered that there was no information available in the Netherlands, where I was living, I am British but I live in the Netherlands married to a Dutchman. And there’s no information, and so together with a couple of other people we set up a patient movement which ultimately led to a patient association.

And I felt that I couldn’t turn the clock back, when it’s taken so long to get a diagnosis you tend to feel very angry: ‘why didn’t they give me the diagnosis? why did they allow these diseases to wreck my life, really?’ I had to change my whole ideas of a profession completely. And my whole family suffered under it because I didn’t have any treatment, and not only that, if you don’t know what’s causing your problems, and I was sometimes very ill, you become extremely stressed and you start to doubt yourself.

Now, I wanted to avoid this happening to other people as far as I could. Well I’m now in my seventies and I’m hoping I can carry on for a bit longer because there is still so much to do, people are still not getting a diagnosis and as Joop van Griensven said today, patients are often not believed by the doctors and even I face this. That the favourite word of, for example, neurologists, is ‘somatisation’ and that stresses patients even more if they feel the doctor isn’t believing them, and stress makes many illnesses worse.

Green: By ‘somatisation’ what do you think they mean?

Moejlink: ‘Psychological’ – in the past they would say it, they would write it to your family doctors, psychological. Now they’ve changed the word. ‘Somatisation’ is the favourite word but it means the same, they don’t believe you.

And I found a particular difficulty in the fact that I’m English but live in the Netherlands, so when I go and see a doctor I’m speaking a foreign language. And describing pain, especially neuropathic pain, which I have, is extremely difficult in your own language let alone a foreign language. It’s so difficult to find the right words, and I find that doctors often are very impatient about this and they don’t even help you to find the right words. They just say, ‘oh that’s not possible it doesn’t exist’, when it’s simply because you’ve chosen the wrong words.

We’ve now got Europe full of migrants so I hate to think what is going to happen in hospitals when these people with a very limited knowledge, if any, of the host country’s language are trying to explain their health problems. And this should be taken into consideration very seriously.

Green: So, in English, how would you describe your neuropathic pain symptoms?

Moejlink: Stabbing, burning, tingling and just horrible sensations sometimes. And sometimes it’s in one place and sometimes it’s in another place and trying to explain that to a doctor, that this pain is moving around. And one day it’s very bad and another day you might not feel it at all and it comes suddenly, it may be short and stabbing, or it may be long and nagging, or it might be quite different, that you sort of have half sensation. Now describing that to a doctor is very difficult, they say ‘you can either feel it or you can’t feel it’. I say ‘no, I half feel it’. ‘That doesn’t exist in our book.’

Evans: Being understood as a patient is one thing, but when health professionals can’t even agree amongst themselves on the simple definition for chronic pain, what hope is there for the rest of us?

Dr Martin Johnson was at the 2016 Societal Impact of Pain Symposium representing the Chronic Pain Policy Coalition and the Royal College of GPs and he chaired the session to discuss the definition of chronic pain. Is it a disease in its own right, or a symptom of some other disease? Now to the layman and even some health professionals I guess, this may be pure semantics, so Tom asked him why it really matters.

Dr Martin Johnson: I think that’s one of the first questions, does it matter? One of the things we’ve done quite a lot of work in, in the UK and we had a big debate about it, was it three or four years ago. That probably from our perspective it didn’t matter, just purely from a clinical point of view, what it mattered was to make it into a condition, which is what we managed to achieve.

Whether it matters for patients – and this is something that I always… I’m always sitting on the fence with this – I actually personally think it does matter. I think it’s very important for patients to know that they’ve got a diagnosis, ‘cos it them gives them a way forward. Now actually some patients don’t necessarily agree with that but it’s going to be an interesting debate.

Green: Have you had discussions with patients that you can call to mind who’ve been aware that this has been a particular problem?

Johnson: For some patients as long as you’ve managed to give them some sort of management plan that to me is the important thing. But there’s the occasional patients where I see where they’ve not been handled in the right way and it’s simply because a diagnosis of some description has not been given as part of their plan. And I’m well know for saying that it has to be assessment, assessment, assessment, because if you don’t get the right the journey – it’s like if you don’t get your ticket right at the start of a journey you end up in the wrong place – and it’s exactly the same if you don’t get the right diagnosis.

And I think there is potential that – we’re still in early days there is no international consensus, and maybe SIP can help us do that – because then we can translate it through. There’s a very interesting article that Ann Taylor and colleagues produced earlier this year. They’ve done a complete review article on whether or not pain is a disease or symptom.

Evans: That’s a debate which seems to go on and on, even though EFIC, that’s the European Pain Federation, and IASP, the International Association for the Study of Pain, made a declaration to the European Parliament as far back as 2001, that pain is a major health problem worldwide. Although acute pain may reasonably be considered a symptom of a disease or injury, chronic or recurrent pain is a specific healthcare problem, a disease in fact in its own right.

If you’ve got an hour and a half to spare you can watch and listen to Doctors Ann Taylor and Martin Johnson supporting the motion, chronic pain a disease in its own right, in a debate recorded in 2012. You can find the debate by going to the website paincommunitycentre.org and putting the words masterclass 2012 into the search box in the top right hand corner.

Ilora Finlay: I’m Ilora Finlay, Baroness Finlay of Llandaff, and I’m Professor of Palliative Medicine in Cardiff and Palliative care lead for Wales. I chair the National Council for Palliative Care.

Green: From the Societal Impact of Pain meeting here in Brussels what’s your sense of how pain management is going to get taken forward at a European level, and what can Europe really do for pain management?

Finlay: Well I’m very glad to see that there’s been a lot of talk about integrating palliative care into mainstream cancer services, and integrating rather than having it as a tack on, an add on. I’m also glad to see that there’s been a stress on the assessment of pain and then appropriate management.

In the group that I was in we discussed the impact on carers as well and on the family witnessing somebody in pain. I think I’ve also been quite shocked actually at the number of stories of really bad clinical decision making that I’ve heard, for instance, the concept that consent is not valued unless it is fully informed really seemed to come as a bit of a surprise to some people. It was almost as if consent to treatment was a given and people just signed on the dotted line. And in the group that I was in I was stressing the ability of patients to refuse treatments if they didn’t want them, if they didn’t feel they were working. And that they still must receive all care, including ongoing monitoring of pain and pain relief.

So this meeting has been very important in bringing people together, in raising awareness of the need for integration and actually bringing pain as the fifth vital sign into mainstream cancer treatment and thinking.

Green: And what does that mean, ‘pain is the fifth vital sign’ in cancer treatment? What would that change?

Finlay: I think what that would change is that it is everybody’s duty at all times to listen to the person in distress, to listen to their pain and to do something about it. And it doesn’t matter whether you’re the therapeutic radiographer or whether you’re a care assistant, a nurse, a physio or a porter, let alone if you’re the doctor or a nurse on the ward, if the person is in pain, then they must be listened to. Pain is where the patient says it is, you need to look at the different components, the different causes and remembering that the acute unrelieved pain that goes on and on becomes chronic pain. But also that in the cancer patient pain is often a sign of something that may be reversible, because it’s a signal of disease in itself. So if you ignore pain you ignore the very essence of the warning lights that are there.

Green: What is different about pain management in cancer care?

Finlay: I would like to say something about the model that we’ve in Wales and the Llandaff cancer centre, because we have totally integrated palliative care with oncology. That means that all the patients are automatically under palliative care, whatever stage of treatment they’re at. So that we look at symptom control, distress, if they’re doing really well with their chemotherapy, that’s great – we don’t see them again when things are sorted. However, if they are in the unlucky group where things aren’t going well and disease progresses, we’ve already got to know them, we link them to services outside, into the community when they go home, into other hospitals.

We’re part of the acute oncology meeting that happens in the hospital and often lead that meeting. We’re supporting the juniors in training and we’re supporting other staff across the hospital. At the end of the day the oncologist carries the final responsibility for the patients’ care – we’re responsible for everything we do but we report to them. And over all the years that we’ve been running that system we haven’t had any problems, thank goodness, in relationships with other people, but we’ve had an awful lot of patients who we’ve helped improve their symptoms and improve their quality of life who, otherwise, if we’d been waiting for a referral, we probably would have never heard about.

Green: When I hear, as a layperson, the words ‘palliative care’, it makes me think that’s for people who are dying.

Finlay: That’s really sad, the end of life story has taken over from actually the helping people live well until they die story, which is what palliative care is all about. We’re all going to die, we all have to plan for the worst, but we can hope for the best and in whatever time we’ve got left – and let’s face it none of us know when that is – in that time we can do all we can to improve patient’s quality of life. And if we do that, and we support the carers, then when that person dies the impact on the carers and the family will be far less damaging if they have prepared for their death, if people know what they want.

So I would hope everybody listening to this will make sure that they personally have made a will, they have told their family what they want when they become ill and when they die, they’ve thought about being an organ donor perhaps. All kinds of things that if they’re not sorted out when somebody dies their family is left with a terrible, terrible burden.

Evans: That was Baroness Ilora Finlay talking to Pain Concern’s Tom Green.

John Lindsay is chair of the patient information and support group Chronic Pain Ireland.

John Lindsay: When you travel to Europe, mainland Europe in particular, and you hear what’s happening in other countries you then appreciate that what you have back home is not that bad after all. So I don’t think there’s any particular country in Europe that could put its hand up and say we are doing extremely well for people living with this horrendous condition.

Green: And what would you say would be what you would hope would come forward out of the Societal Impact of Pain meeting we’ve had today?

Lindsay: I think the most important thing is creating awareness among the medical profession to start with, particularly GPs, and at consultant level maybe neurologists and rheumatologists, who still don’t quite get this whole chronic pain condition. So I think educating all the members of the medical profession. And I think everybody has to have a look at their medical schools and change the curriculum and have pain medicine as a module and I think that should be absolutely number one priority.

Green: Where has Ireland got to?

Lindsay: Pain medicine has been declared a medical specialty and as a result of that our six medical schools are now looking at the curriculum for trainee doctors and they’re going to have pain modules for all of them. Because at present I think for every hour that a medical student spends on pain a vet spends five hours. So that needs to be addressed. It is changing and hopefully it will change throughout Europe. So that’s the first thing coming out of today. And then generally to create awareness, but there’s no point in creating an awareness and getting people’s expectations up if there are no services there to back up what is required to treat somebody with chronic pain and there is no doubt they need a multi-disciplinary team approach.

Evans: Now creating awareness is the aim of the red balloon project launched at the 2016 Societal Impact of Pain symposium. As its headline says 100 million people suffer from chronic pain, help turn statistics into voices.

Joop van Griensven: My name is Joop van Griensven, I’m the president of Pain Alliance Europe, and we’re starting today with the awareness campaign called the red balloon project. You can find it on the hashtag #Releasethepain, you can find all the information over there, or on the website www.theredballoonproject.eu.

Green: So what’s the idea?

Van Griensven: The idea of the project is to raise awareness for chronic pain, it’s about a red balloon which stands for the pain you have and you try to release the pain, so get rid of the balloon. You can do that by popping it, or leave it in the air – for pollution reasons better not put it in the air. It’s raising awareness for chronic pain.

Green: So the idea is to get how many people to do this?

Van Griensven: We would like to get one million people having a picture with a red balloon on one of the instagram, facebook or twitter accounts and then we can in Brussels, here, to the European politicians say, ‘well, so many people want to have something done on chronic pain, now it’s time for you to do something’.

Evans: And to do something, get involved in the red balloon project go to #Releasethepain on social media sites like twitter and instagram, or the website which is theredballoonproject.eu.

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

Don’t forget that you can download all editions and transcripts of Airing Pain from Pain Concerns website, which is Painconcern.org.uk. There you will find information and support for those of us with chronic pain, our families and carers and for healthcare professionals. There is also information on how to order Pain Concern’s magazine Pain Matters.

Now before we end this edition of Airing Pain at the European Pain Federation’s Societal Impact of Pain 2016 symposium I’ll just remind you of what Dr Chris Wells, the president of the European Pain Federation said to Pain Matters editor Tom Green at the start of this programme.

Wells: There is no point in healthcare professionals sitting around talking about what wonderful ideas we have. It’ll never happen unless we get the patients and the politicians on board and I think we truly have. So that’s why it’s very exciting to me.

Evans: So you’ve heard from the patients and their representatives, last word to the politicians.

Theresa Griffin: My name’s Theresa Griffin and I’m with the European Parliament for the North West of England. What I hope comes out of today, Tom, is real recommendations that we can take forward as members of parliament, in terms of putting chronic pain and acute pain higher on the agenda, but also enabling people to have the wherewithal to return to work if they wish to by being treated as a whole person. Four hundred million citizens in the EU suffering from this kind of pain, they have to be able to play a full part in society, we’ve got to be able to support them. It’s not just that bit of your body, it’s the contribution you can make as a person to society, it’s your family, it’s your work colleagues, it’s what you do in your local community, this is too important, it’s got to be holistic.

Contributors;:

Andy Anderson, Cancer Nurse, Maggie’s Western General Hospital, Edinburgh
Dr Chris Wells, President of the European Pain Federation (EFIC®)
Jane Meijlink, Chairman of the International Painful Bladder Foundation
Dr Martin Johnson, Chronic Pain Lead at the Royal College of General Practitioners and Co-Chair of the Chronic Pain Policy Coalition
Ilora Finlay, Professor of Palliative Medicine, Cardiff University
John Lindsay, Chairperson, Chronic Pain Ireland
Joop van Griensven, President, Pain Alliance Europe
Theresa Griffin, MEP for the North West of England.

More information:

The Societal Impact of Pain Platform.

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