Pain Concern

What pain is, and why understanding your pain is important

In this programme Professor Lorimer Moseley, Professor of Clinical Neurosciences and Chair in Physiotherapy at the University of South Australia, explains the relationship between chronic pain and the brain, incorporating personal stories which illuminate this relationship. The importance of providing good explanations of pain to those living with it is also looked at. According to Moseley, the evidence shows that learning about your chronic pain can lead to a reduction in the pain you experience.

Issues covered in this programme include: Understanding pain, physiotherapy, brain signals, education, medical research, neuropathic pain, fibromyalgia, neuroscience, nervous system, educating health professionals, communicating pain and pain perception.

Contributors:

Professor Lorimer Moseley, Professor of Clinical Neurosciences and Chair in Physiotherapy at the University of South Australia.

Evaluating the cost of chronic pain to society and improving public health policy on pain

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In this programme we explore issues affecting the management of chronic pain across the diverse societies of Europe.

In May 2012 over 400 delegates representing 35 European countries met in Copenhagen at the third Societal Impact of Pain conference organised by EFIC (the European Federation of the International Association for the Study of Pain Chapters). Airing Pain was there to listen in and speak to patient groups and leading experts on pain and public health policy from across the continent. We hear how chronic pain accounts for 500 million lost working days in the European Union every year, costing the EU economy over 34 billion Euros.

Interviewees talk about the strengths and weaknesses of pain management in their part of the continent, including Italian successes in raising political interest in pain treatment and a shining example of good practice in Kirklees, Yorkshire.

Issues covered in this programme include: Society, policy, economic impact, pain as a condition in its own right, countries in Europe, patient voice, GPs, co-morbidities, elderly people and unemployment.

Paul Evans: Hello, I’m Paul Evans and welcome to Airing Pain, a programme brought to you by Pain Concern, the UK charity providing information and support for those of us living with pain. This edition is financed by Grünenthal.

John Lindsay: If you have cancer, cystic fibrosis, multiple sclerosis, motor neurone disease you are diagnosed by the physician. Chronic pain is the only one where you go into your physician, your GP or your consultant and say, ‘I have chronic pain, can you help me?’

Evans: In May 2012 over 400 delegates representing 35 European countries met in Copenhagen at the third Societal Impact of Pain conference organised by EFIC, that’s the European Federation of the International Association for the Study of Pain Chapters. Chronic pain accounts for 500 million lost working days in the EU every year, costing the EU economy over 34 billion Euros. Janet Graves covered the event for Pain Concern. She started by speaking with Professor Hans Kress from Vienna. He’s President of EFIC.

Kress: In the minds of many people, of politicians in particular, pain is just a symptom, a symptom of another disease and they have the misconception that also chronic pain is just a symptom of another chronic disease that must be treated and when it’s treated it’s fine and the chronic pain disappears. We know from our many, many chronic pain sufferers that that is not the case. It may develop into a disease in its own right and therefore we have already, many years ago in 2001, proclaimed, stated that chronic pain in many cases must be considered a disease.

Unfortunately, chronic pain does not exist in the classical systems that are used around the world for coding of diseases; for also reimbursement purposes and so on. One typical example is the so-called ICD, that is, the International Classification of Diseases. It’s published and developed by the WHO in Geneva and there you will not find the diagnosis, chronic disease. What cannot be found is not diagnosed and does also not appear in our official statistics; and what is not in the official statistics doesn’t play a role for political decisions. So one step is the result of another, and what we must reach – and we are discussing that during our symposium – is that at least in the ICD 11, that is, in the new version which is in the pipeline of WHO some category of ‘chronic’ appears.

Evans: Professor Hans Kress, president of EFIC. Dr Beverley Collett is a consultant in pain medicine and chair of the chronic pain policy coalition in the UK.

Collett: The Department of Health have said that they would find it conceptually easier to prioritise pain if chronic pain was called a disease in its own right. But pain is very complex and it’s also a continuum. And so you have acute pain after an operation or an accident and that is obviously due to tissue damage and that is not a disease in its own right. If somebody, for example, who has an osteoarthritic hip, they have that hip replaced and the pain goes, so the pain for them was not a disease in its own right. So whilst I think conceptually we know that in some patients you get ‘central sensitization’ and you get changes going on in the spinal chord that are common to many different causes of pain, I think it’s a route which needs to be taken with caution, because otherwise you may get doctors not looking for ways to totally change pain but actually just looking for ways to manage pain.

And so I think it’s something that needs to be viewed with caution. And I think also you need to remember that, as pain specialists in England, we manage acute pain, we manage cancer pain and we manage non-cancer pain and I think dividing it up is actually going to make things much more difficult for us to manage. So I think we need to view that by looking at the patient as an individual and really managing the individual patient in front of us in the best possible way. And I think that that is how we will manage patients with pain to the best of our ability.

Evans: Dr Beverley Collett, Chair of the Chronic Pain Policy Coalition in the UK.

So what is the picture across Europe? Can patients expect the same level of treatment in whatever country they may be? John Lindsay is vice president of Pain Alliance Europe which is a relatively new umbrella organisation representing patients and patient advocacy groups.

Lindsay: They are not vastly different. If we take the country we’re in at present, which is Denmark, everybody would say that generally the health services in Denmark are superb, but I just heard a representative of a Danish organisation who support people with chronic pain say that they had the same issues and problems in Denmark as they do all around Europe. And it would appear to be the same everywhere. Some countries may be slightly more advanced, such as Norway, Portugal, Scotland, Wales; Ireland is doing reasonably well, Germany is doing reasonably well.

But still, on the whole, with 20% of people in Europe living with chronic pain, access to services is very, very limited and correct diagnosis can be a huge issue, which can lead in turn to an incorrect referral, so that one ends up going round the houses before they eventually get to the pain consultant. And waiting times vary considerably. I know, I think, in Denmark they have managed to get it down to nine weeks to see a pain consultant. In the west of Ireland it’s three years to see a pain consultant and you’re just left in pain for three years which is horrendous.

But generally, no-one has ever looked and said ‘What is best practice, all around Europe? Where can we identify best practice? Who is giving those living with chronic pain the best care and management? It is part of the work we will do with the Pain Alliance Europe – we will ask all the national organisations to try and make even initially a rough assessment of what services are available and then compare them. I know recently I was in Northern Ireland and their services were quite good, although they themselves would not think they were good, but they would have access to multi-disciplinary teams, which is absolutely essential.’

Evans: John Lindsay, Vice President of Pain Alliance Europe.

Justino Marasi manages a public company providing health care services for a population of about 350,000 people in central Italy.

Marasi: Unfortunately progress cannot be the same all around Europe for many different reasons. Basically it depends on the background in the different regions of Europe, and also, it depends on the charisma of the different people working in that specific area. The influence we can have from the central action to the local action is extremely important, of course, but is not everything. We can give guidelines, like the one we tried to give with the Roadmap for Action, but at the same time we cannot influence at the local level, because the local level is done by, especially for health care services, it is done via the organisation of patients and especially of politicians. But again it depends also from the influence of local people.

For example I think the action that has been made in Italy is really important because we have succeeded at the political level, obtaining many different advantages for the pain patients, and of course maybe the organisation of the health care is also influenced by the local ability of the different doctors, all in the same country. And this is of course the same for all the countries in Europe and I think in some countries there are spots where the pain patients are treated better, in some others there are spots where pain patients are not cared for at all.

But what we obtained for sure in the last few years is that at least the politicians have started to discuss about pain patients. Now they are more sensitive – pain is on the agenda of a lot of politicians and this is very important, because this is the beginning of the change we can have. ‘

Anne Lloyd: The map of progress in Europe is indeed very patchy and I’m afraid to say that the UK is not doing well at all.

Evans: Anne Lloyd is a trustee of the Patients’ Association in the UK.

Lloyd: That is not to say there isn’t really excellent work going on in the UK. We do research into who’s making the most progress in the Patients’ Association in these areas and there has been some really excellent work done in Sheffield, done in NHS Easton, done in Kirklees and the Kent coast. And again this is an issue of ‘Why is not everybody adopting this good practice, opening up the care pathway and working with local government colleagues to ensure that the services are working more seamlessly together? (And haven’t we been talking about that for years!) And to ensure that the commissioners can have the evidence on which to start to commission a totally different type of pain programme, for which they will then pay, rather than the traditional surgical intervention. That is still necessary in a small proportion of patients but certainly not in 90% of people who refer for back pain and other things.

Evans: That was Anne Lloyd of the Patient’s Association. One of the areas she singled out for praise was Kirklees in West Yorkshire. Now, Dr Judith Hooper is the Director of Public Health for NHS Kirklees and Kirklees council.

Hooper: West Yorkshire’s legacy is of (obviously) mill-working, so there are a lot of low-skilled, low-paid jobs. Some of it was very badly hit by the 80’s recession and it is very much a land of small businesses, so income levels are relatively low, education, relatively low. It’s also got a very high proportion of people from the South Asian subcontinent, particularly Pakistan, where the understanding of pain is significantly different to the indigenous population.

There’s a lot of deprivation, of people on low income, people with low use of resources, and one of the things we’ve tried to do is get people to understand what they can do to help themselves. Encourage things like expert patient programmes, get the right tools – CDs, DVDs from the local libraries – get the librarians trained up to know how to guide people to the right things, whatever they’re coming for, as well as get information out to people, so they’re not dependent on their GP, or they’re not dependent on the system to actually point them in the right direction.

So we’re working with social care workers, we’re working with housing officers and we’re even working with dustmen, in terms of, when they have conversations with the people they’re coming into interaction with, to just give them some ideas about things they could do, even if it’s just becoming more physically active like going for longer walks. So it’s very much about working with people, particularly on the front-line to get them to think differently and get them to be able to point patients in the right direction when they come across them

So, for example in Kirklees we’ve got a website which is called Kirklees Self-care, so if people just Googled that, that would bring up a whole load of resources and opportunities, not just for people who live in Kirklees but other people can access [it] elsewhere on the internet, or even buy stuff off Amazon. So it’s kind of a quality assured resource inventory of stuff that you can do to help yourself.

Evans: Dr Judith Hooper.

Patients in England will see changes as a result of the controversial Health and Social Care bill of 2012. Now, you may not find many people these days who’ll use the words ‘exciting’ and ‘economic struggle’ in the same context, but…

Hooper: One of the exciting things about the economic struggle that we’re all in is there is no more money. There`s a lot of money already in the system, so actually it`s how do we make best use of this. One of the things that actually I have managed to get over to both social workers and local clinicians, is you don’t have to do everything. Just get your sign-posting systems in your clinics, or when you’re seeing your clients, sorted out, so you can actually point the clients in the right direction.

But it’s actually trying to get the system to think about the person in the context that they’re living; that it is not just someone coming with pain in their knee but actually what is the impact of that pain on how they are coping with their work; how they are coping with their relationships within their family; how they get out of bed in the morning – all those basic things in terms of living.

As a result of the Health and Social Care Bill the NHS reforms are actually in three ways. One is around increasing the variety of providers of health care subject to strict regulation. Another one is putting GPs in charge of commissioning instead of primary care trusts and the third thing is that my world, which is public health, is moving to local government where it should have been years ago.

Now what`s that doing? In the short term it`s pretty chaotic as this change goes through. But after about next spring when things will start settling down, I think we have got a real good opportunity here. Because it’s GPs who actually understand that pain is actually probably the biggest thing alongside mental distress that they deal with and they are not very good at doing it and they know that. So if there are things that they can see that will help improve pain management, whether the patients are doing it or there is different ways the health care system can do it, I think they will be really interested in it because it will also save them a lot of money both on prescribing and hospital, both admission and use. And that’s one of the things we’ve been doing in Kirklees and why we have sold it to the GP commissioners in terms of putting in this, what’s called a ‘step two service’.

I think the other bit that’s really exciting and really is positive, is that the NHS reforms are bringing local government, i.e. local councillors together with GPs in this thing called a ‘health and wellbeing board’ which is overseeing both the commissioning of social care and health care together with public health services. The advantage of that is, in my dealings — I brought in councillors ages ago to look at what was happening in pain management to give it some clout –and the councillors are fantastic because they are in touch with their constituents; they know what’s going on in their own surgeries, so they’ve been really helpful in terms of saying to the clinicians: ‘Hey! Why aren’t you doing this? Why haven’t you thought about the patient in this way?’ And I am hoping that in the dialogue between councillors and GPs, we’ve got two sets of people who deal with the public in quite different ways that actually can gel and work well together; and in Kirklees they already do and that feels really positive.

Lloyd: I think the way in which she described how she went about engaging with local authorities and other stakeholders, charities etc. and their expert patients in trying to change the commissioning framework was most encouraging. But in Germany it seems that they are really, really trying to push the societal costs argument to ensure that their governments start to change the way in which they commission and they have had remarkable results about the huge amount of money they have saved in their pilots from treating people completely differently, enabling self-care to take place and getting really, really good at patient and carer satisfaction results, so improved quality of life. That has been very encouraging.

Evans: Anne Lloyd of the Patients’ Association.

Improved quality of life for the elderly is one of the bullet points for this conference on the Societal Impact of Pain in Copenhagen. Dr Chris Wells is president elect of conference organisers, EFIC:

Wells: At the moment 15 % of the population of Europe are over sixty-five, by 2020 that will be over 20%; and by 2030 it will be over 25%, so over a quarter of us will be over 65.

The problem is, we know from this survey, and from other surveys, between 20% to 50% of people over sixty-five have chronic pain, so it has a major impact on their quality of life. Some of them have mild pain which they could manage usually very well, but the most common pain is moderate pain and a very significant number have severe pain.

The cost is in quality of life because most people over 65 aren’t working, but with the aging population of course it is envisaged that people over 65, some of them are going to have to work, because we can`t afford to pay the pensions of everybody over 65 with a longer life expectancy.

So I think, yes, in the future people will have to work on longer, so that there is an economic impact to being over 65 and having pain, but most important is the quality of life. After years and years of working hard, bringing up a family, earning a living, then you get some peace and quiet and retirement and it’s blighted because you have chronic pain. Most people over 65 have more than one chronic illness. High blood pressure, depression, as well as pain, and that makes the treatment of pain even more difficult because some of the treatments that we want to use, some of the drugs we want to use we can’t because of the other conditions.

The problem being that the multi-morbidity prevents adequate treatment because there aren’t any special systems set up to deal with people like that. Most healthcare systems only deal with one problem. Pain clinics are used to dealing with people with multi-morbidity, with the elderly patients with pain with all of the problems and what we need is more access to qualified doctors, staff, nurses, psychologists who know how to manage chronic pain in the elderly.

Evans: Dr Chris Wells, president elect of EFIC.

Here’s John Lindsay of Pain Alliance Europe once again.

Lindsay: One of the things about chronic pain when I think of it: it is the only condition that I’m aware of where you the patient tell your medical consultant that you have this condition. You’re diagnosed with other conditions. If you have cancer, cystic fibrosis, multiple sclerosis, motor neurone disease, you are diagnosed by the physician.

Chronic pain is the only one where you go into your physician, your GP or your consultant and say, ‘I have chronic pain, can you help me?’ There are no diagnostic tools, so the medical profession just have to accept that what the patient is saying is 100% correct.

I was speaking to a consultant last night who specialises in the treatment or management of pain. He said in twenty years treating people with chronic pain, he has come across two people who, if you like, were ‘con artists’ who pulled the wool over his eyes. He said that’s all, because people in pain are not going to wait six months for an appointment, are not going to go to pain management programmes, are not go to pain management clinics, are not going to attend workshops in self-management techniques. So generally for the person complaining, who says ‘I have severe chronic pain’, they have chronic pain and have to be believed.

Lisa Mickenan: I am Lisa Mickenan I come from Finland. I got a slipped disc in ‘98. I was just doing my thesis at Plymouth University and I didn’t understand the problem was so serious and I didn’t go and see the doctor in England, because I couldn’t tell or say the names of the medicines which I’m allergic too. So I went to see the doctor in Finland and on that part I was using my own pain killers which affected my stomach and the doctor in Finland just tried to heal my stomach. And he didn’t believe me when I said that there’s a problem at my back – that something is wrong.

Finally, he gave me a paper to hospital, and on that paper he writes after: ‘a little bit angry young woman wants to be referred to consultant.’ I caused problems at the hospital again because the doctor didn’t believe that the pain is as it is. The doctor just said that the pain can’t be as bad as I said it is. Finally when they took magnetic pictures they found out there is a massive collapse between the vertebrae and they operated but the damage had already happened and I lost some nerves from my leg and also some muscles from my leg.

Lindsay: I think one of the biggest issues facing all people with chronic pain is not being believed: not being believed by your physician is very disappointing but not being believed by your spouse, your partner, your loved one, family, friends is really devastating and leads to isolation, loneliness and I know very recently there was a survey carried out in Australia where they have concluded that possibly as high as 21% of all suicides have a pain element related to them; that the person can no longer live with the pain, so the whole area of not being believed, the isolation, the loneliness, family not believing is a really serious issue that needs to be dealt with.

Mickenan: I have lived with the pain now for 14 years, I would say I have lost everything I used to work hard and now I have no possibilities to work. I am a graduate from university but there is no use for my education. I can’t have children, so I can’t have family. I lost my income because I can’t work, but I am one of the lucky ones: I haven’t lost even one friend during these years, they are still there, good friends.

Evans: Lisa Mickenan of the Finnish Pain Association. The issue of employment is one that was addressed by Stephen Bevan at the Societal Impact of Pain conference. He’s director of work force effectiveness at the Work Foundation. It’s a research and policy organisation based in London. And one of their projects, ‘Fit for Work’, looks at how musculoskeletal pain affects the health of the European workforce.

Bevan: Chronic low back pain is one of the biggest causes of sickness absences from work. It has a massive economic impact about £12 billion a year in terms of the wider European economy and it can also affect people’s psychological well-being, their mental health and its one of those areas where physical and psychological health combine together and so chronic pain associated with things like fatigue have a big impact not just on and sickness absence from work but the speed with which people return to work. We’ve seen from some pan European surveys recently, for example, that the proportion of European workers who report that they are in jobs that require repetitive movements or require difficult postures, after a long period of decline, is now going up again in some occupations and so I think there are things about working conditions and the design of jobs and the design of the working environment that could still be improved to make sure that people are at lower risk of developing chronic pain caused by their work.

Most employers are very reluctant to think creatively about how they can make adjustments to the workplace to accommodate people with long term and chronic conditions and yet the evidence is that the cost of doing so is very, very small. I have to say that, if you are an employer and one of your existing staff has a new diagnosis, it’s more likely that you are going to be more sympathetic and make changes to their working environment. But if you are recruiting and one of your candidates happens to have a long term condition that involves chronic pain it is quite unlikely that you will recruit them in the first place. So for me, the big challenge is to get employers with staff that already have these conditions to recognise the skills and attributes these individuals bring to the business and make very tiny adjustments – often that’s all that’s needed – and they are often very inexpensive, and so the more we can do that, the more we can allow people to stay in work much longer.

Evans: Stephen Bevan of the Work Foundation.

I’ll just remind you of Pain Concern’s usual words of caution that whilst we believe the information and opinions on Airing Pain are accurate and sound, based on the best judgements available, you should always consult your health professional on any matter relating to your health and well being. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf.

Don’t forget that you can download all editions of Airing Pain from www.painconcern.org.uk. You can also get CD copies direct from Pain Concern. All the contact details are at the web site including those to put a question to our panel of experts, or just to make a comment about the programmes via our blog, message board, email, Facebook, Twitter or pen and paper.

The last words from the 2012 Societal Impact of Pain conference go to Professor Hans Kress, President of the European Federation of the International Association for the Study of Pain Chapters, and, representing the host nation, Pia Frederiksen of the Danish Association of Chronic Pain Patients.

Frederiksen: I am so grateful; it’s very important that such a big event as the Societal Impact of Pain is here in Copenhagen and also because our society in Denmark is far behind in this pain issue. So, we do hope that it will increase some inspiration for the politicians so they can see that it’s a very big effort. We do have problems. It’s not ok that so many of us are outside the labour market; it’s not ok that so many of us end up on benefits or sick leave or early retirement. We really do want to contribute to society, but society has failed to help us.

Kress: We have been very proud that the European Commission for Health and Consumer Protection has taken patronage of our initiative, which shows that now we are also existing in the minds of our politicians. And we have at least achieved that not only the media but also the politicians have recognised that chronic pain is a problem for the future development in our societies and something that has to be solved by our national healthcare systems, and something that has also to be taken into consideration when we are talking about our strategic plans for 2020 for all our European counties.

Contributors:

Professor Hans Kress, President of EFIC
Dr Beverly Collett Chair of the Chronic Pain Policy Coalition in the UK
John Lindsay, Vice President of Pain Alliance Europe
Justino Marasi, Manager of a company providing health care services in Italy
Anne Lloyd, trustee of the Patients’ Association, UK
Dr Judith Hooper, Director of Public Health for NHS Kirklees and Kirklees Council
Dr Chris Wells is president elect of EFIC
Liisa Mikkonen, Finnish Pain Association
Prof Stephen Bevan, Director of Work Force Effectiveness, the Work Foundation
Pia Frederiksen, the Danish Association of Chronic Pain Patients.

Evaluating the cost of chronic pain to society and improving public health policy on pain

This programme was funded by an educational grant from Grünenthal.

In this programme we explore issues affecting the management of chronic pain across the diverse societies of Europe.

In May 2012 over 400 delegates representing 35 European countries met in Copenhagen at the third Societal Impact of Pain conference organised by EFIC (the European Federation of the International Association for the Study of Pain Chapters). Airing Pain was there to listen in and speak to patient groups and leading experts on pain and public health policy from across the continent. We hear how chronic pain accounts for 500 million lost working days in the European Union every year, costing the EU economy over 34 billion Euros.

Contributors:

Professor Hans Kress, President of EFIC
Dr Beverly Collett Chair of the Chronic Pain Policy Coalition in the UK
John Lindsay, Vice President of Pain Alliance Europe
Justino Marasi, Manager of a company providing health care services in Italy
Anne Lloyd, trustee of the Patients’ Association, UK
Dr Judith Hooper, Director of Public Health for NHS Kirklees and Kirklees Council
Dr Chris Wells, president-elect of EFIC
Liisa Mikkonen, Finish Pain Association
Professor Stephen Bevan, Director of Work Force Effectiveness, the Work Foundation
Pia Frederiksen, the Danish Association of Chronic Pain Patients.

The challenges of improving pain management in Northern Ireland, and raising awareness of chronic pain among businesses

To listen to this programme, please click here.

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A special edition of Airing Pain, covering the 2012 Northern Ireland Pain Summit, organised by the Pain Alliance for Northern Ireland. There we interviewed representatives from government and the voluntary sector, health professionals, and of course patients.

Patients attending the summit give us their stories and say what brought them there and Tania Kennedy, Director of Business in the Community, sets out her thoughts on how the world of business can better take account of chronic pain.

Dr Pamela Bell, Chair of the Pain Alliance for Northern Ireland, and Kate Fleck, national Director for Arthritis Care in Northern Ireland, conclude with their thoughts on the ‘road map’ for action following of from the pain summit.

Issues covered in this programme include: Employment, workplace barriers, policy, raising awareness, misconceptions, patient experience, healthcare funding, arthritis, young people, multiple sclerosis, accessibility, the role of employers, community healthcare and exercise.

Paul Evans: Hello I’m Paul Evans and welcome to Airing Pain, a programme brought to you by Pain Concern, the UK charity that provides information and support for those of us living with pain. This edition is financed by Grünenthal.

Pamela Bell: At the end of the conference for me it is important that the Health Minister, the Health Committee and the Northern Ireland Assembly take on board the asks of the road map that’s been developed and really putting pain up the health agenda throughout Northern Ireland.

Evans: In May 2012 Pain Alliance Northern Ireland organised a summit to raise awareness of the extent of the problem of people living with chronic pain. Janet Graves covered the event for Pain Concern; she started speaking with Chief Medical Officer for Northern Ireland, Dr Michael McBride.

Dr Michael McBride: We know how common chronic pain is; we know that somewhere in the region of 1 in 5 people in Northern Ireland suffer from chronic pain and I think it comes as a unique and indeed challenging opportunity because we’re at, I suppose, a crossroads in terms of provision of health and social care in Northern Ireland. We have a new blueprint, a road map for the future direction of health and social care in Northern Ireland called ‘Transform Your Care’ which our Health Minister Edwin Poots has endorsed. We’ve recently launched a long-term condition strategy, both of which are very relevant in terms of how we improve because I think that’s what it’s really about, about improving the care that we provide people living with chronic pain.

I mean, how do we empower patients living with chronic pain, giving them the right skills and knowledge and information to manage their own pain better, to give them their sense of control back over the management of their pain, which I think is vitally important I mean there’s nothing as disempowering or as disabling as chronic pain. I think also its about how we ensure that we raise the level of awareness amongst those health professionals working in primary care. It’s about ensuring that we have a phased approach to the management of people living with chronic pain: a better integration of services; a better integration between our GP practices and indeed the specialist treatment that can be provided in a hospital environment with all of the professionals that input into that.

Chronic pain is a challenge because of the diversity of people affected by and living with chronic pain because again it can originate from a wide variety of conditions, whether we’re talking about arthritis, diabetes, people who have had, or are having, problems after a stroke, people living with side effects of a drug treatment, for instance, with cancer which can cause very painful neuropathy. So it impacts on such a wide range of conditions, that the co-ordination of that and the standardisation of a more methodical and integrated approach to supporting people living with pain and ensuring that they get access to the right services at the right time by health professionals who are both skilled and knowledgeable in terms of the management of chronic pain and, most importantly also, they can decide when they have reached the edges of their knowledge and skills and when it’s appropriate to refer on to someone with more specialist knowledge.

And I think these are the challenges in Northern Ireland, how do we reduce the patchy availability of these services, how do we make the best quality of care and experience uniform throughout Northern Ireland and I think the challenges would be no different in my view than across the rest of the United Kingdom. I mean I don’t think there’s any doubt in what we all aspire to – whether that’s someone living with chronic pain, whether that’s someone caring for someone living with chronic pain, whether it’s a doctor, nurse or health professional working in primary care, whether it’s a voluntary sector organisation, whether it’s a commissioner of services, or an official in a department or a minister – we all want the same thing, which is the best care we can possibly provide for patients living with chronic pain in Northern Ireland.

Dr Pamela Bell: I’m Dr Pamela Bell, I’m formerly a consultant in anaesthesia and pain medicine working at Musgrave Park Hospital for most of my career and I’m currently Chair of the Pain Alliance for Northern Ireland and that is a group that is focused on providing support for patients with chronic pain. The conference today is of real importance, the very first time that we have in Northern Ireland brought together those leaders and decision makers in health care, including the Minister for Health, Social Services and Public Safety and the Chief Medical Officer and the most senior commissioners, together with health care providers and clinicians, patients, their families and carers and the voluntary and community sector – and I’m particularly pleased since chronic pain is really about the impact on how we live and work that we also have representatives from business and the community talking about how work can be good for our health and how employers need to value patients or employees who have chronic pain but still contribute significantly to the workforce. So yes, a big problem for health care, a big problem for social care, but more broadly a problem for employers, for employees and for society at large.

So I see the Pain Alliance as being the catalyst for all of this, the bringing together of perhaps rather diverse interests and saying well the commonality, the thing we all join together in, is wanting to have improvements in those services for patients with chronic pain.

Evans: Dr Pamela Bell, Chair of the Pain Alliance for Northern Ireland, organisers of the 2012 Northern Ireland Pain Summit.

Now in terms of services provided for people with chronic pain in Northern Ireland, there are differences between what each Healthcare Trust provides, probably as you’d find across the whole of the UK. But there’s one statistic that does surprise me. Dr William Campbell is Consultant in Anaesthesia and Pain Medicine in Belfast.

Dr William Campbell: Statistics show that there are perhaps as many as twice the number of chronic pain sufferers, probably mainly associate with spinal pain, in the North of Ireland compared to southern parts of the British Isles. This could well be associated with lifestyle – patients don’t have the opportunity to get out just as much in Northern Ireland, could well be even as simple as the weather being much poorer, several degrees cooler, wetter weather but the ability to get out and walk and mobilise the spine can have two beneficial effects: one being that it actually mechanically helps move the spine much more readily to keep the flexibility up and, in addition to that, the psychological wellbeing of the individual, just to get out and about.

From the point of view of help from the various Trusts in relation to both funding and from the point of view of services that were available. From the point of view of funding, if they were taken into account with the Trusts’ budget, it actually worked out at something in the region of 40 to 50p in every thousand pounds was spent on delivering pain services. Now that wouldn’t take into account separate physiotherapy and rheumatology, nor would it be likely to take into account the likes of their analgesic budget from the pharmacy. But other aspects would be the availability of various services within each Trust. So although pain clinics and pain management programmes have developed and gradually built up in each of the Trusts within Northern Ireland, there is still scope for increased activity.

Ideally the Conference will highlight the fact that there is a relatively small amount of funding put into pain services, especially chronic pain services and that should be taken in context with the fact that one of the commonest causes to attend a general practitioner is with pain and musculoskeletal pain –it practically equals all the other problems added together. So whenever you consider that there’s only roughly 50 pence in every thousand pounds spent on pain clinic services it’s literally a drop in a jug of water, it’s really really very little. At the end of the Conference we’d hope that over the coming months and years we would see an increase in the availability of both physiotherapists and psychologists to help provide multidisciplinary support for patients as well as some improvement in the facilities for medical staff to provide a better service for patients.

Bell: One of the reasons why a Conference like this is so important at this time is that, in the wider sense, health and social care is being re-drawn for Northern Ireland and following the publication of the Compton Report it is clear that it is the intention of our Department of Health that services will be available to patients much closer to their home and within their own communities and that this care will be focused on their individual needs. So when we look at the provision of Pain Clinics as such, mostly, in Northern Ireland, based in hospitals and widely scattered in the province with more gaps in provision perhaps than coverage, then we can clearly see that there is not enough local service.

Now, changing from where we are at present, into a situation where much of the care is delivered within your general practitioner’s office or within your community, will require a good deal of education. Education not just of the general practitioners and other health care professionals within the community, so that their level of skill in managing and indeed diagnosing the presence of chronic pain will really be lifted to an extent where patients notice a real difference in finding it much easier to get the right treatment at the right time.

Dr Jim McMullan: My name’s Jim MacMullan, I’m a GP in Tynan, just outside Armagh, and I’ve worked in the chronic pain service in Northern Ireland for over 10 years now. Pain is the third most common reason for a person to come to their GP and chronic pain sufferers are five times more likely to come to their GP than someone who doesn’t have chronic pain, so that represents a huge burden and a huge challenge to general practice. What is sometimes lost in the ether is that chronic pain is a chronic disease, very much like diabetes or asthma or epilepsy and by definition often cannot be cured but requires management. This management requires a bio-psychosocial holistic approach to the person and sometimes prescribing a tablet is not enough for these people.

When they come to me in secondary care clinics a lot of our patients expect an intervention, an injection, a drip, an operation, a scan, something, you know, very much on the medical model and, as is often the case after a full assessment, it transpires that there’s much more going on in their life than just the pain – there’s the social issues, there’s the financial issues, there’s the psychological issues and the mental health issues.

There was an article that the BBC news covered a few days ago of the Scottish experience in treating all chronic diseases with chronic pain included in primary care head on by the Dundee and Glaswegian professors of general practice. And they pointed out that these complicated complex individuals with multiple medical problems are often managed in a disjointed and fragmented way and that, rather than investing in more and more specialists for these people, perhaps there should be a case for more generalists to look after the whole patient, rather than neurologists for one bit, orthopaedic surgeons for another bit, rheumatologists for another bit etc. etc., gynaecologists, urologists – more generalists required for the joined-up thinking overlooking the entire process for the entire patient rather than focusing on one anatomical bit as it were.

When the patient gets explained to him what is going on here and what the evidence is for their condition and that injection therapies and extra drugs may actually not help the condition and technically could make them worse with side effects and that there are other things out there that does not involve taking extra drugs, if they’re willing to engage with the pain management programme, with the psychologists, with the physios, with the OTs, with the nurses and doctors that at the end of that there they almost invariably will feel better. A lot of them, a little light comes on and they say ‘Yeah, I’ll have a go at that.’ Then of course there are some people who are very resistant to this and seem to think that all you’re saying it’s all in my head doctor, which is absolutely not the case.

But, it’s almost self-selecting – those who are willing to embrace this whole concept of acceptance and self-management and looking after themselves will always do much better than those who are in denial and who sit back and want to be referred on for another investigation or another injection or another test. They have not reached that level of acceptance and the real challenge is getting the resistant people to accept that there are things out there other than more drugs, more interventions, more injections, more drips or more scans.

Evans: Jim McMullan.

Now, before we continue I’ll just remind you of our usual words of caution that whilst we believe the information and opinions on Airing Pain are accurate and sound, based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf.

Back to the 2012 Northern Ireland Pain Summit – and as you heard, delegates included representatives from every sector of the pain community, from Government, health professionals, the voluntary sector and of course, patients. Kate Fleck is National Director for Arthritis Care in Northern Ireland.

Kate Fleck: One of the examples I gave at the conference this morning was the impact on parents living with a child who’s been diagnosed with arthritis and the impact on the whole family is immense. You already are a parent of probably one or two or three children so it becomes more complex, you’ve got to deal with health professionals, hospital visits, you have also the priority of your other children – the ones who are not living with a long term chronic condition – whereas your child with a long term condition who very often has pain; and there’s nothing worse for a parent seeing their child in pain and feeling helpless.

Again part of the work we do in Northern Ireland, we’ve got a really good parent support group and we run very positive programmes for children: positive future body image; take them away on physical activity weekends and say ‘yes you can’, even with arthritis and even if you hurt you can actually take part in these things as long as they’re geared and done in a safe environment. So I think for parents and families with children with arthritis it has a real impact and I think the other side of that then is the family member who becomes a carer. And, again, it is difficult for people living with long term conditions to see their spouse or a family member becoming a carer, having to give up their independence, having to maybe give up their work to look after that and really guilt sets in and for the carer, you know, they lose part of themselves in that whole caring role. Most of the carers don’t mind but it changes the dynamics of the family and the relationships.

Nancy Toner: Hi I’m Nancy Toner from Belfast. I was diagnosed with rheumatoid arthritis when I was 16, a very scary prospect at that age. I have since then been through lots of hospital appointments, medications, operations. A long-term condition, rheumatoid arthritis, it never really leaves you. I’ve had 17 joints replaced and they’re all working well but I know there’ll be more.

When I was 16 I didn’t fully understand what it was going to mean to me. My Mum understood more and became quite upset. I now know why, it’s with you every day; it’s affected all parts of my life, my working life, and my social life. I have a family now and my children don’t know me to be pain-free; they know I need help in all areas of the housework. My husband has been a great support: he knows by looking at me if I’m in pain, if I’m having a bad day or if I’m having a good day. I’ve been in pain longer than I haven’t been in pain because I’m now 61 – but I’ve grown up with it and it’s always been with me as a sort of companion. Sometimes it can be a difficult companion but I have learnt to cope with what I have and self-manage my situation and I feel that I am in control of it most of the time.

O’ Loughlin: I’m Naomi O’ Loughlin, I work voluntarily with the MS Society on the Northern Ireland Council and I’m Vice-Chair of my local branch. When a family member suffers from chronic pain it doesn’t just impact on the individual, it impacts on the whole family, sometimes you end up with a partner, spouse or whatever taking on a role of carer; and that’s not something that they signed up for. It can have a lot of emotional pressure, a lot of financial pressure to, your career is impacted, sometimes you have to give up your work – you’ve got that loss of earnings.

With a condition like MS it can strike at a young age; I was 24 when I began to exhibit the symptoms of MS. I mean, we’d just taken out a mortgage, we’d just bought the house, I had two children of 2 and 3 years old – your whole world just implodes around you, you try and make sense of that, it’s very, very difficult and there’s an awful lot of pressure on your relationships and a lot of times people even just slightly outside your family group don’t see the pressure. I suppose you have to learn to ask for a wee bit more help and explain your circumstances because a lot of people just think ‘oh I can manage this on my own’. But wee bit by wee bit by wee bit you know, they do get eroded, your self-confidence goes and you do sometimes just need a wee bit of help.

Evans: Naomi O’ Loughlin, a volunteer with the MS Society.

Tanya Kennedy is the workplace director with Business in the Community. It’s a not-for-profit business membership organisation promoting corporate social responsibility. So where does the world of big and small business fit into the management of chronic pain?

Kennedy: It is well proven now that it is the responsible businesses that are the most successful and part of being responsible is looking after the well-being of your employees and being an inclusive and a happy work environment so people are productive. So in terms of that, what employers and workplaces want to do is identify people with chronic pain and find solutions so that they will be happy and productive at work; it’s good for the person, it’s good for the business.

I think it’s very important that we have this conference in Belfast today because when I was asked to talk about the impact that the workplace can have with chronic pain, I was absolutely astounded at the lack of information that was available to employers, yet workplace as a setting is a huge opportunity to make a real difference to people’s lives in terms of their health and well-being and that includes chronic pain.

There’s a startling statistic that the cost of chronic pain to a business is likely to be higher than the cost of diabetes and heart disease put together. Yet at this point in time employers are investing huge amounts of time and money encouraging people to improve their lifestyle habits. Now if they can take the same approach to what will change attitude towards chronic pain and encourage and support people with chronic pain to remain at work, the return on investment for that could be phenomenal and employers really can make a difference to the lives of people with chronic pain because 45% of people with chronic pain don’t work at all. However, those who are in work don’t at this point in time have the confidence it appears to discuss with their employers what their own personal needs are. Yet employers want skills into the workplace, particularly at the moment that people with chronic pain can offer them simply by making some adjustment.

O’Loughlin: I think it’s a brilliant idea to try and encourage employers to bring skills into the workforce. There’s an awful lot of people out there that don’t conform to the traditional 9-5 – they can’t – but they would so love to be part of it and everybody has their own unique skill-set and being able to give something back… you need a focus, you need a purpose for life and that’s part and parcel of managing your condition – whether it’s for financial gain or not, but you need to be doing something that makes you happy and makes you feel as if you have a purpose so your bringing home money at the end of the week too, that’s an added bonus, but it’s a lot to do with how you feel about yourself as a person and your self-worth as well.

Kennedy: There is a lack of understanding I would suggest at this point in time of what chronic pain can be and we heard from great speakers today who live with chronic pain as to people’s reactions to the adjustments that are made for them so it’s up to employers to educate the people in the workplace. It’s good for them too to help and be sympathetic towards people with chronic pain and to appreciate how good life is without it.

There’s a big gap at the moment in my experience in the workplace and that is with line managers and supervisors. We all start work in one form or other when we work and then perhaps we’re promoted and we don’t know how to take responsibility for people because it doesn’t come naturally in most of us. So employers need to look at that part of their population, educate them in everything around diversity, including chronic pain – there are lots of different reasons that people are different, so that they can empathise and make the work experience for everybody at work the best it can be. It’s a change in attitude more than a cost. There may be some costs involved with some individuals, however, it’s a shift in attitude and it’s a shift in workplace culture to one that’s accepting and that doesn’t cost anything and not only that, in shifting that culture it will probably add to the success of the business.

Evans: Tanya Kennedy, the director of Business in the Community.

Now the 2012 Northern Ireland Pain Summit was organised by the Pain Alliance for Northern Ireland and as part of their work and key to the Summit, was the development of a road map for action. Pamela Bell again…

Bell: We hope that by listing things that might be achievable, that in fact we can look back and see what progress is being made. So, given the changes that are likely to occur, we feel that education – education for healthcare professionals and perhaps, particularly for those healthcare professionals in the community, is going to be key to patients seeing the early changes. So that may mean that when they go to their General Practitioner, rather than simply being given a prescription for yet another painkiller, that they might be signposted to a community group for support – exercise or walking group – that they might get to a physiotherapist who can help them overcome fear of movement and thereby help with their rehabilitation.

Fleck: Given some of the statistics that were given out at the conference this morning around the lack of pain services in Northern Ireland, it’s essential that clinicians get more training on pain; that they also learn I think to work in partnership with the voluntary sector who have lots of expertise in running self-management programmes and refer to us. I mean I can talk from a personal experience where I had a consultation 11 months previous for a condition called bursitis and 11 months on I only got injections in my hip – 5 minute injections but an 11-month wait. You know, that really is kind of unacceptable treatment and I am not the only one by a long shot waiting on those sorts of times for treatment and medical intervention.

Bell: There’s much change going on and someone needs to lead that change. So one of the other things that we have suggested would be the creation of a lead clinician for chronic pain, perhaps similar to the lead clinician role in Scotland, so that someone has oversight, someone can keep the train on the tracks through all this change, someone can look at the gaps in the services and say ‘well this is perhaps where we ought to invest and this is perhaps where we can let things sit because they’re doing quite nicely thank you’. But key to successful change is good leadership and in the absence of good leadership I’m not quite sure how effective that change can be. One of the other aims in our road map is to encourage patients in their self-management of their condition.

Fleck: The message from me really is around the self-management agenda, the importance of that, if we’re going to have waiting times and people are waiting longer, there are things that people can do for themselves. They can pick up new skills, new ways of managing pain that don’t mean always rushing for the pill bottle. It’s about learning breathing techniques, relaxation techniques, a little light exercise, getting out in the fresh air, trying to encourage socialisation, not sit back in isolation because there’s nothing as bad as feeling isolated, despairing. You do need contact; if you can learn and be supported to learn how to self-manage I think it’s a great bonus to someone living with pain.

Evans: Kate Fleck, National Director for Arthritis Care in Northern Ireland and before her Dr Pamela Bell, Chair of the Pain Alliance for Northern Ireland, organisers of this 2012 Northern Ireland Pain Summit.

And before we end this edition of Airing Pain, I’ll just remind you that you can still download all editions of Airing Pain from www.painconcern.org.uk and you can also get CD copies from Pain Concern. If you’d like to put a question to our panel of experts or just make a comment about these programmes, then please do so via our blog, message board, email, Facebook, Twitter or pen and paper. All the contact details are at our website once again www.painconcern.org.uk.

We’ll end this edition of Airing Pain with the views of Nancy Toner and Naomi O’Loughlin.

Toner: There are some very positive messages coming out of today. I think that a lot of the people here today maybe are only realising the importance of it as they go away today and take the information away with them.

O’Loughlin: I have a rheumatologist who said to me once ‘I would like you to speak to students, because you know more about rheumatoid arthritis than I do’ – and this was a rheumatologist. I was quite shocked, but he said, ‘well you’re living with it, I’m not’. So these conferences are good at bringing awareness to politicians, GPs, everyone here today has learnt quite a lot about chronic pain and how the public have to live with it.

Contributors:

Dr Michael McBride, Chief Medical Officer for Northern Ireland
Dr Pamela Bell, Chair of the Pain Alliance for Northern Ireland
Dr William Campbell, Consultant in Anaesthesia and Pain Medicine in Ulster
Jim MacMullan, a GP from Tynan, Co. Armagh
Kate Fleck, National Director for Arthritis Care in Northern Ireland
Nancy Toner, patient representative
Naomi O’ Loughlin, volunteer with the MS Society
Tanya Kennedy, Director of Business in the Community.

The challenges of improving pain management in Northern Ireland, and raising awareness of chronic pain among businesses

This programme was funded by an educational grant from Grünenthal.

A special edition of Airing Pain, covering the 2012 Northern Ireland Pain Summit, organised by the Pain Alliance for Northern Ireland. There we interviewed representatives from government and the voluntary sector, health professionals, and of course patients.

We hear about the needs of patients and provision of pain services in Northern Ireland from, among others, Chief Medical Officer, Dr Michael McBride, and Dr William Campbell, Consultant in Anaesthesia and Pain Medicine at Ulster Hospital, Dundonald, Belfast. Patients attending the summit tell us their stories and say what brought them there and Tanya Kennedy, director of Business in the Community, sets out her thoughts on how the world of business can better take account of chronic pain.

Contributors:

Dr Michael McBride, Chief Medical Officer for Northern Ireland
Dr Pamela Bell, Chair of the Pain Alliance for Northern Ireland
Kate Fleck, national director for Arthritis Care in Northern Ireland
Dr William Campbell, Consultant in Anaesthesia and Pain Medicine at Ulster Hospital, Dundonald, Belfast
Tanya Kennedy, director of Business in the Community.

Living with ankylosing spondylitis and psoriasis, plus, listening to the patient perspective and educating health professionals

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In this programme we look at ankylosing spondylitis (AS), a form of arthritis affecting the spine. Paul Evans speaks to Iain MacDonald and Tom Downie of the Edinburgh branch of the National Ankylosing Spondylitis Society, about their role in supporting people with the condition. Paul also talks to Janice Johnson of PSALV (Psoriasis Scotland Arthritis Link Volunteers) about psoriasis.

Issues covered in this programme include: Ankylosing spondylitis, patient voice, educating health professionals, education, inflammatory arthritis, joint pain, young people, school, policy, hydrotherapy, exercise, hereditary, physiotherapy, stretching, triggers, misinformation, dermatology and psoriasis.

We also interview speakers from the Annual Scientific Meeting of the British Pain Society. Pain Concern’s Sue Clayton gives a patient perspective to healthcare professionals, while Emma Briggs of the British Pain Society’s Pain Education Special Interest Group explains the importance of improving the pain education of healthcare professionals.

Paul Evans: Hello I’m Paul Evans and welcome to Airing Pain, a programme brought to you by Pain Concern, the UK charity that provides information and support for those of us who live with pain. This edition’s been made possible by Pain Concern’s supporters and friends. More information on our fundraising efforts is available on our Just Giving page at www.painconcern.org.uk.

Tom Downie: I went to the Ideal Home Exhibition a few years ago and the man selling the beds, he says, ‘excuse me, sir, you’ve got ankylosing spondylitis, would you like to buy a bed’.

Janice Johnson: Some GPs are fantastic and others don’t know an awful lot because their training in dermatology’s been cut and some of them only get about 2 weeks dermatology training in 6 years.

Emma Briggs: We did include the vets in our survey and the vets on average did have a higher pain education in terms of the number of hours, compared to those being educated on the human healthcare side of things.

Tom Downie: I know it’s nothing, but he knew just by looking at you. I mean that was just a man selling beds.

Paul Evans: More about GP training and top tips on medical diagnosis from a bed salesman later. Now ankylosing spondylitis, or AS, is a condition where some, or all of the joints of the spine fuse together. It’s one of the three most common forms of inflammatory arthritis along with rheumatoid and psoriatic arthritis. They’re separate conditions, but what each has in common is that the body’s immune system is wrongly triggered to attack itself, causing pain, stiffness, damaged joints and, if left untreated, possible disability.

It affects around 200,000 people in the UK and I met Iain MacDonald and Tom Downie, Secretary and Treasurer of the Edinburgh branch of the National Ankylosing Spondylitis Society. Tom was a teenager when the disease took hold.

Downie: I was at boarding school and we’d be playing football or something and the next day I just couldn’t move out of bed, just seized up. I just couldn’t move and the nurse would come and put some Deep Heat or something on and I’d be fine a few hours later. That went on through my school years, but as I got into my 20s I’d get the Deep Heat on but it’d still be sore for 3 or 4 days and I’d be out of action for weeks, just not being able to move. I was getting all the pain killers and things and, although it would maybe take some of the pain away, you just couldn’t move, you were that stiff. I never got diagnosed till I was maybe 30 years old and by then I was away stooped over, I couldn’t see where I was going, life was just hell and you get depressed and things like that. Then I got my hips replaced when I was 35 and that made a big difference, constant physio and things, so now I can walk about, any distance I need a walking stick, but life’s alright.

Evans: Working out the maths, it took 15 years to be diagnosed. Why was that?

Downie: At 15 or 16 at school you were seen as ‘Tom you want to get off doing something, he just wants to stay in bed’. When I started working I would go to work at 18-19, you would have to have a week of here and a week off there, you just couldn’t do things. And when you’re that age you don’t want to go to the hospital, you don’t want to go to the doctors, but eventually when you do, you just get diagnosed lots of different things: its stiffness, its juvenile arthritis and I’d be in my late 20s when actually somebody says, ‘I think it’s this, ankylosing spondylitis’, and I had a further investigation.

Evans: If you were a 15 year old now going through it would it still take 15 years?

Downie: Well I’ve got a son who’s 22 and when he was 13 he went through the same sort of thing, he was told he had some type of juvenile arthritis and he would have days off school and things like that and he had a carry on and he, unlike me, liked school so it was quite a problem for him. With me already having it, we went to the doctor, got diagnosed fairly quick and got offered physiotherapy, so within 2 years or something he was getting offered physiotherapy, but I wasn’t getting offered physiotherapy for 15 years.

Evans: So has he had a successful diagnosis because of your knowledge or has it moved on?

Downie: I think a bit of both. At first it was because of my knowledge, but the group we go to on a Monday, you do hear and you see younger people coming now, not very often, but you see them, they seem to get diagnosed in their twenties now and it would take maybe me 10 years before I had it. So they do seem to diagnose it a lot quicker.

Evans: As an organisation, the National Ankylosing Spondylitis Society, what are you doing to help people get better treatment or more information?

Iain MacDonald: Tom and myself and another colleague, Campbell Barr, have been going along to the Scottish Parliament for the last 3 or 4 years to various Committees to try and get publicity, such that ultimately the information gets spread. The members of the Society get 3 principal things: one is interface with fellow sufferers so that they get information on potential problems and perhaps how to cure them; the hydrotherapy sessions that we’re lucky enough to have in Edinburgh and gymnasium sessions. So we get an exercise regime that will help at least keep the problem at bay if not necessarily cure it.

Downie: Also, I think that if people know about the Group and they know where you can get the information, so somebody like me that got hip replacements in their thirties and I’ve got a son who’s 22 – with him knowing about ankylosing spondylitis – because even something as simple as posture, you find out all that information, so you can avoid problems like having to get hip replacements… knowing the right physio, the right exercise, the right medication, where you can stay in work longer and things like that.

Evans: Talking about your son having it as well, is it hereditary?

Downie: Yes, I don’t know the official statistics but just going by me I’ve got 3 sisters, one of them has got ankylosing spondylitis and another one’s got psoriasis and there’s a connection between psoriasis and ankylosing spondylitis. My son’s got it, to see him you wouldn’t notice, he looks fit, but at least with me knowing these things I can get on to him when I see him watching TV slouching, I can get on at him to sit up and it can avoid problems in your 50s and 60s. There’s something that you can do now.

MacDonald: I can confirm that it is hereditary, my father had it and I have four sisters, one of whom has also got it. We’re keeping our fingers crossed, I’ve got three kids and we have no sign of them actually having the problem yet. So, as Tom says, I’m 2 out of 5 got it so we’re keeping our fingers crossed about our kids.

Evans: What advice would you have for somebody who’s just been diagnosed with ankylosing spondylitis?

MacDonald: I would ask them to find a local NASS branch, and there are many throughout the country, and gain the benefits that I’ve personally gained from it: the speaking to people who also have the problem, finding out what their problems are and perhaps helping you getting into the hydrotherapy sessions, the gym sessions. In my personal circumstance, Campbell Barr, who I mentioned before, actually had physiotherapists organised to do measurements – there’s a system called a ‘Bath system’ [Bath Ankylosing Spondylitis Disease Activity Index (BASDAI)] – that actually measures your degree of stiffness and pain. There’s a 3 sheet set of statistics that people can measure how badly you are or otherwise. It’s thanks to this measurement regime that that then got referred to the rheumatologists. I gained huge benefit personally through going along to the NASS organisation branch in Edinburgh.

Evans: Tom, on a day-to-day basis, what advice would you give somebody who’s just been diagnosed with ankylosing spondylitis?

Downie: The key is keep moving. As Ian says, on the Monday night we’ve got half an hour in the hydrotherapy, they’re trained physiotherapists, they know what they’re doing. So that makes a difference, you get that hydrotherapy on the Monday, then through in the gym, 45 minutes of light stretching, you go at your own pace. And once you get into that routine of doing that, I just feel that it just sets you up for the rest of the week. Even a Jacuzzi, before you go in the Jacuzzi you might get 25 steps without a seat but once you’ve been in that Jacuzzi you can maybe walk 100 without a seat. Movement is the key.

Evans: Tom Downie and Iain MacDonald. And you can find more information about ankylosing spondylitis including details of the local branches of the National Ankylosing Spondylitis Society from their website, which is nass.co.uk. That’s nass.co.uk.

Now, I mentioned the link between AS and psoriasis, or psoriatic arthritis. Janice Johnson helps run a small Scottish charity, PSALV. It stands for Psoriasis Scotland Arthritis Link Volunteers.

Janice Johnson: I myself have psoriatic arthritis which I’ve had since 1974, diagnosed in 1974, unfortunately wasn’t given good treatment back in the 70s and 80s and there are now a lot of newer medications available. There’s no cure, its similar to rheumatoid arthritis in some ways in as much as it’s an inflammatory arthritis but back in the 70s and for 25 years after I was diagnosed, I wasn’t given anything other than non-steroidals and I should have been given second line medications. So for 25 years I had little flares and that left me with quite a lot of damage which is not reversible other than with surgery. It’s similar to rheumatoid in as much as if you get in quickly with the diagnosis of this you can treat it, you can’t cure it but you can treat it. Osteo’s more difficult actually because it’s wear and tear, but with the inflammatory types if you can get in early you can do more, so that’s basically what happened to me. But I do have a lot of pain and a lot of stiffness and I can’t walk very far now because I’ve got a lot of tendon damage – ankles, feet, knees – so my mobility’s not good.

Evans: Now a lot of people might know about psoriasis but not know the link between psoriasis and arthritis.

Johnson: Psoriasis is an overgrowth of skin cells but there’s also an inflammatory response and you don’t have to have a lot of skin psoriasis, which is red scaly patches, to have problems with your joints. This is part of the problem, you might have just a tiny bit of skin psoriasis, just a tiny little bit and then develop sore fingers and toes which is one of the most sort of classic ones and unfortunately GPs, like a lot of things, are not terribly well trained in spotting this and the link is the inflammation, the inflammation for some reason in about 1 in 5 people with any skin psoriasis, not necessarily extensive, it doesn’t have to be, you know, you don’t have to be covered in psoriasis to get this, develop some problems with their joints. And again it’s very rare there might be one finger and you might be in a wheelchair. So we’re not trying to frighten anyone but it is a progressive thing so you do need to treat it early. Some GPs are fantastic and others don’t know an awful lot because their training in dermatology’s been cut and some get about 2 weeks dermatology in 6 years, which is ridiculous.

Evans: So what should people look out for?

Johnson: Well anyone with diagnosed psoriasis should be aware of this – not to frighten anyone – but if you get a swollen puffy finger or toes or actually pain in your heel – the heel’s another common place – the back of your heel, sort of tendonitis, you should go and ask your doctor if you can get a referral to dermatology to see what’s going on, without terrifying anyone because it might be something else. Don’t get terrified and think, ‘oh my God I’ve got psoriasis ‘, just, you know, keep an eye on it.

Evans: I’m glad I’m speaking to you because I have a little bit of psoriasis and I will keep an eye on it.

Johnson: And you’re terrified! Bear in mind most people with skin psoriasis don’t get problems, as I say, it’s about 1 in 5.

Evans: Well you’ve been rummaging through your bag and I’ve got exactly what I need which is a leaflet from… ‘This Is Psoriasis’. I must read this and thank you very much indeed.

Johnson: Thank you very much, thank you.

Evans: Janice Johnson from PSALV, that’s Psoriasis Scotland Arthritis Link Volunteers. She and the previous speakers made reference to the adequacy of training for health professionals. Sue Clayton has been involved with Pain Concern for many years. Having had chronic pain for over 30 years, she was invited to give the patient perspective to health professionals at the 2011 Annual Scientific Meeting of the British Pain Society.

Clayton: The model where someone has an acute illness they are treated and then discharged is the sort of condition governments are interested in because they get a pathway, they get an outcome that they can measure. Chronic pain’s a very different sort of condition, it’s a long-term condition, people have probably got it for the rest of their lives, unfortunately, and I think it calls for a different sort of relationship with the clinicians the patient is working with, in a way a much more caring relationship, and I think one of the hardest things that patients like me are facing at the moment is the way that medical services are changing – it’s that patients like me desperately need continuity of care with their medical advisers and that is what is being lost in the health service at the moment.

It doesn’t make sense for me to have to go into my general practitioners and be prepared to see anybody of the 5 GPs who work there and have to repeat my story endlessly so that they understand where I’m coming from. They have doubts usually because of some of the drugs which I’m on, whether this is suitable, whereas my much lamented, splendid GP who’s recently retired, because she’d known me for 20 years, we’d built up a relationship and she trusted me. I trusted her to give me the best available care that she could manage but she also trusted me, she knew that I didn’t swing the lead, she knew that I took my drugs responsibly, she knew that I put effort into self-management, she knew that if I came to her and said ‘things have got much worse. I help need with a particularly difficult period, a bad flare-up…’ that that was genuine, I wasn’t making it up. And she only knew that, because she’d known me for a long time and you know, known me over a period of time. And that’s being lost and that makes it very difficult for GPs at the coal face to work with people with long-term conditions like chronic pain because they’re complex, pain is subjective, it’s invisible. In a sense they have to take an awful lot on trust of what their patients are saying and how can they have that trust if they haven’t built up a relationship with the knowledge of their patients. So at the moment it’s very, very difficult I think.

There needs to be a huge amount more training going into clinicians dealing with chronic pain, both right from the undergraduate level, right up to specialists… to understand that patients really struggle to cope with their lives and that a lot of them are really doing their best, but that often life is extremely difficult and also pain fluctuates so much, you may go along fine for 6 months and then wake up and for some unknown reason, you have a terrible flare-up, that’s what happened to me 3 weeks ago, nothing I could put my hand on. People say to me all the time, ‘oh do you know what happened?’ And I say ‘no.’ And that makes it very difficult for the patient because they don’t know what to avoid, they don’t know how to manage better.

If there was a trigger, I know that if I do something really stupid, if I dig the garden, of course I’ll have back pain but it can happen without any warning at all. And this makes it so difficult to explain to clinicians and for them to believe you, because perhaps they’ve seen you out and about and you look perfectly alright. I mean most people seeing me would think I look perfectly normal, they don’t know that sitting here today I’ve got searing, burning pain from my waist to my toes – it just isn’t visible.

How do you judge somebody like that, it’s a very difficult situation both for doctors and for patients and so I think there really has to be a model where patients have continuity of care, in a relationship where they trust the doctors to actually believe what they say, they accept it and be prepared to perhaps put the barriers down a little bit, treat them as human beings who are capable adults who are trying to lead their lives as well as possible. Nobody wants to be in this situation; they’ve had it forced upon them. I would give anything not to be living like this but I have to. It’s very easy to judge people with chronic pain and judge them very unkindly and that happens with both the general public and from clinicians and other health professionals at times… to take things on face value without actually talking to patients and finding out what’s going on underneath.

Evans: Sue Clayton, who spoke at the 2011 British Pain Society Annual Scientific Meeting. In the following year’s meeting I spoke to Emma Briggs, she teaches at the Florence Nightingale School of Nursing and Midwifery at Kings College London. She’s also Chair of the British Pain Society’s Pain Education Special Interest Group. Their aim is to enhance the education of qualified health professionals and the patient education that they provide. So why should healthcare professionals who’ve been through years of training need this?

Emma Briggs: Very good question. We recently conducted a survey that we published within the European Journal of Pain which looked at the amount of education that was provided to our undergraduates and that looked at the education that was given to dentists, to nurses, doctors, midwives, physiotherapists and pharmacists and the number of hours of education that they receive is actually very low: the average hours for a midwife was 6 hours, in the whole of their curriculum; nurses receive an average of 10 hours; doctors an average of 13 and the overall average was 12 hours of education.

Evans: And you’re talking about education, about pain issues?

Briggs: About pain, yes and considering it’s the reason that people seek health care and the amount of pain that people experience that’s a relatively low number in their curriculum. So it’s less than 1% of their curriculum that actually includes pain management, so we are trying to increase the number of hours of education devoted to pain management but also how it’s taught within our universities within the UK.

Evans: You missed that one category in your list and that’s vets.

Briggs: Vets – yes, now we did include the vets within our survey and we replicated this survey from Canada and there were five vet schools within the UK and unfortunately we only got two respondents. But the vets on average did have a higher number of pain education in terms of the number of hours compared to those being educated on the human healthcare side of things. However, we can’t, you know, it was only two schools. But it is a surprising statistic that they have a higher number of hours in their curriculum, but that comes down from their regulators. The regulators of the veterinary undergraduate programmes stipulate that pain should be in there and then the quality assurance body that follows that up to make sure that education is being delivered well – they say that pain should be in there so they kind of attack it from both sides, whereas, as part of the survey we looked at the healthcare regulators, such as the Nursing and Midwifery Council, the General Medicine Council, whether they had made those stipulations – and in some cases they had but in many cases they hadn’t, you know, so we really need to tackle things from the Regulator so that they encourage and stipulate that pain should be in the curriculum.

Evans: It’s hotly rumoured that there’s an event this summer called the Olympics.

Briggs: Yes.

Evans: You’ve managed to get it into one of your titles as well.

Briggs: We have indeed and our workshop today was called Citius Altius Fortius and launching our Olympic campaign for pain education. And that was really about saying, there’s been some great developments about pain education for healthcare professionals for patients and the public, but actually we need more and we need to be higher, faster and stronger on this and we really need to push the agenda you know, and one of my lines within the workshop was, ‘you haven’t got a £2 billion development fund neither have we got a one-eyed mascot’, but there’s much that we can do collectively to really move this agenda forward. And we’ve been working with a number of people and from that workshop some great ideas have come out and we will be sort of rolling those out to kind of improve pain education over the coming months.

Evans: What sort of ideas?

Briggs: Well we have the inter-professional undergraduate curriculum document coming out later on in the year, so that’s a working party that’s being chaired by Dr Nick Allcock and we are looking at producing a document which really helps people put pain education into their curriculum. Because people can face a number of barriers one fellow academic said to me ‘but my Head of Department has said, I’ve got a number of penguins on my iceberg which one do you want me to push off in order to fit pain in the curriculum?’

But we want to change these sorts of attitudes to say, you know we don’t need to push off any penguins, we need to make sure that each penguin knows how to manage pain but you know they’ve got the skills to do that. So this document is a real sort of practical… how to help the person champion pain management within their university, how do you integrate it, how do you try and get healthcare professionals learning and working together, because the reality is in clinical practice that nurses, pharmacists, doctors all need to work together to help the patient, but at the moment our survey has shown that they don’t; they don’t learn together, they learn separately on their courses and we need to change that. So this document is very much about saying how can you get the healthcare professionals learning with, about and from each other, so that when they qualify they are able to work really well inter-professionally and for the best interests of the patient really.

Evans: Tom, do you find that doctors find difficulty in diagnosing your condition?

Downie: Well years ago, yes, but younger medical students, younger doctors, they can look at you and some of them see you walking into the room and they think, ‘ankylosing spondylitis’, you know. I went to the Ideal Home Exhibition a few years ago and the man selling the beds, he says, ‘excuse me, sir, you’ve got ankylosing spondylitis, would you like to buy a bed?’ You know what I mean?!

So, I know it’s nothing, but you know what I’m saying – he knew just by looking at you, and that was just a man selling beds. And I think as well, the younger students, they can see, but that can be a danger as well because somebody like Iain, although his neck’s stiffer and that, he’s not stooped over like me. But just because you’re not stooped over you can still have ankylosing spondylitis.

Evans: But you were telling me earlier that you get involved in training doctors and even consultants.

Downie: Well yeah, it’s just called ‘Exemplar Patient Programme’ and its 3^rd and 4^th year medical students and we spent an hour-an hour and a half in the room with them talking to you, and they want to know how you were first diagnosed and how you feel your GP in particular dealt with your problem and how you feel it could be improved and if they become a doctor in 5 years’ time and somebody walks in with a sore back, how could it be improved.

Evans: So in short, you go along to the hospital as an exemplar patient; a group of doctors, young and old, come in and they have to work out what’s wrong with you.

Downie: Well yeah, as I said, you go down there, there’s maybe four or five other people like me and we get put into five rooms and there’ll be four or five groups of students and their job is to try and guess what’s wrong with that person. And there’ll be me with ankylosing spondylitis, somebody with rheumatoid arthritis, somebody with other forms. And I have noticed over the years of doing this, they seem more informed than the doctors were 20 years ago, put it that way.

Evans: So, of the consultants, the student doctors and the double bed salesmen, who gets the best training?

Downie: [Laughs] I think the young doctors, the 4^th year students seem to be more with it now than ever before, in my opinion anyway.

Evans: The big thing about pain education is that all the information and the help is there but we just don’t know it’s there.

Briggs: Yes, yeah. It’s very true actually. Dorothy Helme here is our link with the Patient Liaison Committee and is a co-opted member of the Education SIG [Special Interest Group] and she was reflecting on that point this morning when she was telling her journey from when she first started experiencing pain to her diagnosis. She was saying, you know, ‘I am a nurse by background, but I am a pain sufferer and I did not know where to look and there was not nearly enough information out there for me, couldn’t find the information, I hadn’t even found the information from the British Pain Society’.

So again there’s a lot to be done there in terms of awareness and helping people find the appropriate and well-informed information resources for them; and support groups and specialist support groups as well.

Evans: Emma Briggs, Chair of the British Pain Society’s Pain Education Special Interest Group.

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

Our usual words of caution are that whilst we believe that 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 or wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf. And that goes for information and guidance you will find from other sources, particularly the internet. Emma Briggs to close the programme.

Briggs: The internet is a fantastic resource but it can also contain some very unreliable information; and in fact Dorothy was reflecting on her experiences of using the internet and finding very negative information on the internet, which was not helpful for her as she was searching for some help for her facial pain condition. And it’s very difficult to judge, I mean, the students that I work with they have a whole programme on how to use the internet effectively to actually make those judgements as to who is it written by, when was it last updated, what was the purpose, was there any advertising around with it that might be influencing it. It’s very, very hard to actually judge whether this is a reliable source of information and actually whether the person who’s written it is actually a real doctor, nurse etc. So it is a difficult judgement to make, and of course you type your key terms into some internet searches and you may get sites which actually have paid to be top of the agenda and so therefore they might have some certain biases as well.

Contributors:

Iain MacDonald and Tom Downie, Edinburgh branch of the National Ankylosing Spondylitis Society
Janice Johnson, PSALV (Psoriasis Scotland Arthritis Link Volunteers)
Sue Clayton, Pain Concern
Emma Briggs, Lecturer at the Florence Nightingale School of Nursing and Midwifery, Kings College London and Chair of the British Pain Society’s Pain Education Special Interest Group.

Living with ankylosing spondylitis and psoriasis; plus, listening to the patient perspective and educating health professionals

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

Contributors:

Iain MacDonald and Tom Downie, Edinburgh branch of the National Ankylosing Spondylitis Society
Janice Johnson, PSALV (Psoriasis Scotland Arthritis Link Volunteers)
Sue Clayton, Pain Concern
Emma Briggs, Lecturer at the Florence Nightingale School of Nursing and Midwifery, Kings College London and Chair of the British Pain Society’s Pain Education Special Interest Group.

How gender can influence experiences of pain, and living with cluster headaches

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We hear about orofacial pain (pain of the face and mouth) from Dr Barry Sessle, a professor in the Faculty of Dentistry at the University of Toronto in Canada. Dr Sessle also explains why some types of chronic pain are more common in women than men. Continuing with this topic, clinical psychologist Dr Amanda Williams talks about pelvic pain and the difficulties men in particular have in coming forward to seek treatment.

Issues covered in this programme include: Gender, pain perception, migraines, cluster headaches, pelvic pain, orofacial pain, sex differences, women’s pain, men’s pain, urogenital pain, society, communicating pain, breast cancer, prostate cancer, brain signals, throbbing pain, burning pain, nerve blocker and relationships.

The International Association for the Study of Pain designated 2012 as the Global Year Against Headache. We speak with a husband and wife on how they manage as a couple to live with husband Phil’s debilitating cluster headaches.

Paul Evans: Hello, I’m Paul Evans and welcome to Airing Pain — the programme brought to you by Pain Concern, the UK charity that provides information and support for those of us who live with pain. This edition has been enabled by an educational grant from Pfizer Limited.

Phil O’Brian: Before I was diagnosed the pain is so bad that you automatically think that you’ve got something in your head, a growth in your head or whatever, and everything flashes through your mind. Nothing can hurt that much, it cannot be normal that you can have that much pain and you’re going to live.

Sue O’Brian: Phil would pace up and down and be out in the garden at 3, 4 in the morning, and he’d be really irritable so I would sort of stay away from him. I didn’t know whether to help him or to stay back.

Evans: The International Association for the Study of Pain designated 2012 as Global Year Against Headache; headaches being among the most frequent of medical complaints seen in General Practice. And they take on many forms: from tension type headaches, migraine, to rarer conditions such as trigeminal neuralgia, all of which we’ve featured on Airing Pain.

Later in the programme I’ll be talking to a husband and wife, and how they manage as a couple to live with husband Phil’s debilitating cluster headaches. But I want to start with Doctor Barry Sessle. He’s a professor in the Faculty of Dentistry at the University of Toronto in Canada and he specialises in orofacial pain. That is pain of the face and mouth.

Dr Barry Sessle: Some of the most common pain conditions in the body, whether they’re acute or chronic, occur in this region. And particularly for the chronic pain conditions in the orofacial region, the face, the jaws, the mouth, like many chronic pains elsewhere in the body, we don’t know very much about their etiology, what their cause is, and how they progress. And so that makes diagnosis and especially management problematic, when you don’t know exactly what are the underlying mechanisms. And so I’ve spent the last 40-45 years trying to work out these mechanisms, particularly using animal models of acute and chronic orofacial pain.

Evans: What are the other problems with facial pain?

Sessle: One of the most common – other than toothache, which is probably one of the most common pains in the body – there’s also headaches of course, different types of headaches, and some of them can actually get expressed, or be spread to or referred to, parts of the mouth or parts of the jaw. And also another very common condition is called temporomandibular disorders, where there’s pain in and around the jaw joints or in the associated muscles. And basically 5-10% of the population have temporomandibular disorders and there’s a female predominance. There’s in fact a female predominance in most chronic pain conditions, not all, but most. And so clearly gender plays a factor in a number of these chronic pain conditions in the orofacial area, as well as elsewhere in the body.

Evans: Do you know why that is?

Sessle: There’re genetic factors involved in the manifestation of the pain, and part of that is related to sex differences. Some of our own research has shown that, firstly in animal models, the responsiveness of the nerve fibres supplying parts of the face and mouth and jaws and the jaw joint, there’s a sex difference in how they respond. So in animals for example, you give a chemical agent to activate these nerve endings in the joint or muscle, the jaw muscle, and with this particular chemical activation the female rats, for example, those afferent fibres, sensory fibres in female rats were much more responsive that those in male rats. And likewise if you inject this chemical into awake humans, into their jaw muscle for example, again young women are much more sensitive, give much higher pain ratings, much more spread of the pain that they indicated, compared with young men.

This is important because it means that there’s physiologically based sex differences in these peripheral pain mechanisms. Not even talking about the brain and possible differences in how males and females may differ in their neurochemistry and neurocircuitry related to pain within their brain, but even in just the sensory nerve fibres outside the brain, there’s these physiologically based sex differences.

Evans: Put simply, does that mean that women hurt more?

Sessle: Yes, there’s actually been documented in women, humans – and again I’m generalising, it can vary from one country to another or from different racial and cultural groups – that females, for example, have lower pain thresholds, they have greater pain sensitivity at threshold, but they also have lower pain tolerance, they can tolerate pain.

There are these tests one can carry out in a controlled environment to measure pain threshold or pain tolerance or ratings of pain between those two extremes and it’s very clear that in a number of these racial, cultural groups that there are these sex differences. And of course one of the questions as well, is that psychologically based, is it physiologically based and is it centrally based – in other words is it within the brain that’s causing this, or is related to this sex difference? Or is it the nerve fibres themselves?

As I said, we have established that it seems that at least the peripheral nerve fibres, there’s some differences in how they respond to some painful stimuli. Doesn’t mean that’s how they respond to all painful stimuli, it just happens to be the ones that we were testing. But also you have to take into account that of course there’d be differences within the brain. There are differences between males and females in the neural circuits in the brain and the neurochemicals that are used in those circuits.

Evans: So, taking that back to facial pain then, dentists and clinicians should be aware that men and women are feeling different pain?

Sessle: That they could be, yes, they could be, yeah. It’s important to establish that there are these physiologically-based differences because many times in the past, and maybe still happening in some isolated cases, that women complaining of orofacial pain, or pain elsewhere in the body, had been sort of sloughed off by the clinician, and saying, ‘this is just a female thing, it’s being, they’re just exaggerating, being, you know, too emotional about it’ and so on. And they’ve attributed it to that and really haven’t managed the pain properly, just sloughing if off as a female thing that’ll eventually work out. But there are these physiologically based differences, well established, both in the peripheral nervous system and in the central nervous system, sex differences.

Evans: Doctor Barry Sessle, from the faculty of Dentistry at the University of Toronto in Canada.

And we’ll stay with gender differences for the moment because one area where men and women most definitely differ is of course the pelvic region. Physical differences aside, men and women have different attitudes towards pelvic pain and many men put this in the category of ‘women’s problems.’ And the reticence to discuss their own pelvic pain can, and does, put their lives at risk. Doctor Amanda Williams is an academic and clinical psychologist and she works mainly at University College London.

Dr Amanda Williams: It’s a particularly difficult pain for people to talk about, to disclose to those around them. So particularly men, we’ve found, tend to make up a cover story which then isn’t very consistent, because that’s not where they feel pain and they don’t behave in a way that shows they have pain in whatever they said… their knees. It is a difficult problem to disclose, people may laugh rather than sympathise, as they might over another pain.

People worry about something being wrong, with all visceral pains, sort of pains inside the body cavity, they can be quite diffuse, they may be quite sharp, but they may be quite diffuse and hard to locate. Many people aren’t quite sure what’s inside them and of course they start to worry about things like cancer or tissues torn or damaged in some way, something horrible going on, and find it hard to get the information that’ll reassure them.

Evans: Well, you’ve just confirmed what happened before we switched this recorder on. I had a little giggle about urogenital pain, because I assumed that’s women’s problems.

Williams: That’s very interesting isn’t it? Because you’re absolutely right, lots of the websites which say ‘chronic pelvic pain’ only refer to women. Even scientific papers which are titled ‘Chronic Pelvic Pain’ only refer to women. But men can also get pelvic pain, sometimes for the same reasons, to do with muscular pelvic floor. And then of course men and women do have different organs and they’ll have different pathologies and problems that affect those organs. But it is seen as a woman’s problem and I think that, again, makes it hard for men to talk about it.

Evans: So what problems do men get?

Williams: They may be very specifically located in the genitals, they may be much more generally in the pelvic cavity, they may affect their bowels – it often happens with irritable bowel syndrome. Men may have problems in particular activities or positions, so very keen cyclists are a bit over represented. And certainly in the cycling literature there’s a lot of discussion about how to make saddles more comfortable and padded clothing to help. So it’s clearly a problem that then just goes over the top in some people. So really a great variety of things, which again makes it hard for men to find information easily, that they feel refers to them.

Evans: Why do you think men have a problem in discussing this?

Williams: They find it harder anyway to talk about emotionally laden issues, things that worry them. They tend to look more for information and hard facts, perhaps, rather than reassurance as well. Women might go for both. We know that in all sorts of health areas people talk to friends, family members, many times before they reach a doctor, unless it’s something very urgent. Women do that far more than men and they’ll get a range of opinions among which may be, ‘oh yes, I know somebody who had that’ or ‘I had that and, yes, I went to my doctor and I was given this.’

So you start to get an idea of the possibilities if you talk about it to other people. If you have something fairly rare and you don’t talk about it, you’re never going to get any of that reassurance that it might be treatable, that a doctor will understand and take it seriously and so on. And of course some of the men we’ve seen have said that they’ve felt the female doctor wasn’t terribly sympathetic, although others have found them fine.

Evans: One thing that people have told me is very effective is when a, say, high profile sports star comes out. I mean it’s happened recently that John Hartson had testicular cancer. And he was very, very open about just leaving it to go and go and go and he’s survived it. But it could have been very different. Now I actually know people who’ve been worrying about the same thing for years and just one trip to the doctor, just one 10 minute appointment, makes them sleep at night again.

Williams: Exactly, or else get directed to further investigation treatment. Now I think it’s really admirable when people do do that. I don’t know about that particular sportsman but I do know that with Kylie Minogue talked about her breast cancer, it’s lead to a really significant increase in young women going to doctors either with worries about breast lumps or going to mastectomies or just taking it more seriously and not seeing it as something that only affects other people.

Evans: So men must not be bashful.

Williams: A doctoral clinical psychology trainee of mine did two very nice bits of research: one was literature review but the literature was what was available on websites. So she used typical web-surfing behaviour to look at what would be available to men who looked up urogenital pain, chronic pelvic pain on the web. And actually, of course, many sites were for women only.

But when she found the sites she looked firstly at whether they gave good information on the causes of pain, which can be helpful information for men and often reassuring and the second was whether they gave any reference to psychology, psychological consequences, difficulties, distress and so on. And she found it was really quite hard to obtain both those bits of information. Only three websites that she found had good psychological information, quite a lot more had information about cause but some of it was seriously out of date or misleading.

The second bit of work she did was talking to men about what they thought was wrong with them before and after their first consultation at the pain clinic when they were coming for urogenital pain. And men were very keen to have a mechanical explanation that made sense to them, for which of course some needed some extra background information about how the mechanics works anyway.

We were expecting more cancer fears and we actually saw rather few. What was nice to see was that when men felt they’d been investigated for cancer often at an early stage via the GP and it was ruled out and it stayed ruled out, they didn’t come back to that worry later. And that’s very good to see because in some groups you see people keep on coming back to the cancer worry, you know, six months after the scan was done they think, well, perhaps it’s developed recently. So that was good to see.

But they were often very bewildered about the possible cause. And because pain is a problem within the nervous system about it functioning differently, it doesn’t fit very well into a mechanical explanation and you can develop analogies about computers or phones and so on but none of them is really convincing. So it’s quite hard to get a convincing explanation of pain in the urogenital area for men and I know quite a lot of the doctors use a lot of diagrams to convey that. But again, with static diagrams you can’t show how messages instead of going along the nerves occasionally are firing off all the time and then the brain of course experiences pain.

Evans: When I was worried about testicular cancer, not seriously worried about it but I had a pain in my testicles, something you don’t really talk about, I didn’t make an appointment with my female GP, I made an appointment with a male GP and he felt my testicles and then he said, ‘I’m just going to stick my finger up your bottom.’ Had I known that was going to happen [Williams: …you wouldn’t have gone…], I would not have gone – but I’m very grateful that I did go and everything was ruled out.

Williams: Exactly, and as you say, then you can sleep at night.

Evans: I know. But I wouldn’t have gone if I’d found a website that said your doctor was going to do something like that…

Williams: Yes, that’s a very good point because it does put people off, although one can with that information say, ‘this is perfectly normal, the doctor does this many times for investigations and is completely unbothered by it.’ So you just have to think of yourself as, for instance, another person in a long row of people having that investigation. But I agree, it does put people off. And what came out of this research project was very often that men haven’t found anything that made a huge difference to their pain but what they had done was resolve those worries enough. They felt that really horrible things had been ruled out; they knew they weren’t going to steadily get worse and that was enough for them to feel, ‘Okay, now I know where I stand, I can start to think about what I need to do differently’, and so on.

And there’s some good evidence for physiotherapy helping some of those pains, whereas before they wouldn’t have considered physiotherapy, now it makes sense to them to try that and so on. So it was kind of opening some good doors and closing some bad ones that she had heard over and over again from men who had had their consultation and felt better for it.

Evans: Well, I can confirm that it’s exactly as you say it is. [Laughs]

Williams: That’s great to hear!

Evans: Clinical psychologist, Dr Amanda Williams. Now at this point I’ll just say our usual words of caution, that whilst we believe the information and opinions on Airing Pain are accurate and sound, based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances and therefor the appropriate action to take on your behalf.

As you heard earlier in the programme, 2012 is the International Association for the Study of Pain’s Global Year Against Headache. Now cluster headaches are excruciating. They’re more painful than migraines or any other type of headache. In fact they’re so severe that they’re often described as ‘suicidal headaches’.

Phil O’Brien: My name’s Phil O’Brien and I suffer from cluster headaches.

Sue O’Brien: I’m Sue O’Brien, I’m married to Phil and I also suffer when he suffers with cluster headaches. [Laughs]

P O’Brien: True, true.

Sue O’Brien: I do.

P O’Brien: I’ve had them for six years and it took us two years to find out what it was, which apparently is quite quick. Most people don’t find out, they’re not diagnosed with clusters for four, five, six years. And I’ve just been told there have been people who haven’t been told, not known, what they’ve been suffering from for 10 years plus. So we found out quite quick, really.

Evans: Just tell me what a cluster headache is.

P O’Brien: A cluster headache’s not like a migraine; you’ve got a nerve in your head and basically it sends out too big a signal. So most people’s nerve is sending out little signals, making things work in your head and making things happen, and mine sends out – when I’m having a cluster headache – there’s something in the brain stem, isn’t there? [S O’Brien: Uh, huh…] becomes active and my nerve sends out massive signals. So I get pain in the ear, in the eye, in the teeth and in one side of the head, it’s only ever one side. So mine’s on the left side. So when I first got ’em and we didn’t know how to treat them I could be in absolute agony. I liken it to someone parked a lorry on your head, the pain, and that could go on for 4 or 5 hours.

S O’Brien: Whereas obviously in a migraine people like the quiet and you get sort of get agitated, and you pace up and down a lot, don’t you. So the symptoms are totally different to a migraine.

P O’Brien: So we read articles where they say it’s a migraine times 10 on the pain factor but I don’t know because I’ve never had a migraine.

Evans: Somebody called it a suicide headache?

S O’Brien: Yes.

P O’Brien: Yeah, we was just talking to the specialist just now and he’s known of people committing suicide whilst having a headache. It is a severe pain. You can’t describe to someone what it’s like…

S O’Brien: You say it’s like a clamp, don’t you? …and it just keeps tightening, and tightening until you can’t take it anymore.

P O’Brien: It’s as if someone’s putting your head in a vice and they’re tightening the vice until you really can’t take any more pain and then they give it another half a turn. And they won’t release it and you could have that for two hours. It’s not a throbbing, it’s constant pain. You just can’t describe it.

S O’Brien: So in the beginning we didn’t know what it was did we?

P O’Brien: I used to head-butt the wall, didn’t I? And bash myself in the head. And so I can quite believe that people could give up on it, if you like, you know, give up on it.

S O’Brien: You used to hit yourself didn’t you? Saved me doing it I suppose! [Laughter] You did get quite agitated. But we’ve learnt now the best thing for Phil is I would leave him alone and let him deal with it. I’m always in the background, and if he wants anything he’ll tell me.

P O’Brien: When I get a cluster now…

S O’Brien: We’ve got a routine haven’t we?

P O’Brien: Yeah, because it’s been diagnosed and we’ve got various treatments, so we can take an injection which gets rid of it quite quickly. If it’s not too bad a headache then I can take some painkillers and then we have to wait for it to go but the side – mine’s is on the left side of the head – and I’m burning up… so Sue knows that we’ve got two flannels and she gets really cold water and she keeps swapping the flannels for me and she knows that I like…

S O’Brien: …they come off actually really hot, so he’s actually burning up and we change the flannels, like, every 30 seconds….just constantly changing them.

P O’Brien: And then Sue knows that I like to have a cup of tea, so in the early days I used to get agitated. I used to say, ‘get this, get that, leave me alone.’ And that’s not in my nature normally. But when I was in the middle of a cluster headache, I become bossy… [S O’Brien: Irritable…] and sometimes I just needed her to go away and leave me alone.

S O’Brien: But now we don’t really talk to each other much. So I just get on with what I’m doing, we’ve got a little routine going…

P O’Brien: Yeah, we’ve got a lovely system going where we deal with it together, don’t we?

S O’Brien: And there was a stage when I used to wake up before Phil would have a cluster, because I knew he was going to get one. So I’d wake him up and he’d wake up and say, ‘Yeah, I’ve got a headache coming.’ But I was aware that he’d be scratching his head in his sleep. So I’d wake him up and say to him, ‘you gonna get a headache?’ [P O’Brien: And I did.] And he did.

Evans: How did you know then?

S O’Brien: We found out that in the beginning, Phil’s headaches were just at night-time; they were one hour after we went to bed, regardless of what time we went to bed. We used to set the alarm for 45 minutes after we’d been to bed to try and wake up before, but my subconscious always used to wake me up when he started sort of fidgeting in bed so I wouldn’t particularly sleep quite deep. And sometimes it might go past the hour and I’d wake up and think, ‘oh he hasn’t had a headache yet.’ I’d get back to sleep and then he’d wake up with one so…

P O’Brien: There’s a weird thing where, as Sue just said, if we went to bed at 11 o’clock at night, the headache was exactly 12 o’clock. If we went to bed at 10 to 1 in the morning the headache was at 10 to 2. And it’s almost like your brain has become this… [S O’Brien: ‘You could set your clock by it.’] You’d lay down and you go to sleep and you’d become into a relaxed state and once your brain, say, after an hour’s sleep, your brain must switch off or whatever or do whatever it does. And my brain thought, ‘ahh, now’s a good time’ and it used to fire off these signals which would create this headache.

We could deal with that. When it was every night, or every other night and it was just at night, we could deal with that because we used to get out of the bed, get rid of the headache and go back to bed. That wasn’t a problem. For the last two years they’ve started coming during the day. So now you’re driving along, all of a sudden you’re aware you’re gonna get a headache, you’ve got to pull up wherever you are, you can’t drive, you can’t concentrate, you can’t really talk to anyone. So now, it’s sort of affecting our lives quite badly.

S O’Brien: Yes because the other week he was on three or four a day; so every time we get him doing something we’d have to stop.

P O’Brien: So hence we’re now back at the migraine and head clinic and they’re now looking at other methods because the treatment I was on, it basically isn’t working any more. It used to work but my headaches have actually got worse and worse. So we’re now in the throes of having other treatments, aren’t we?

Evans: So what treatment is that?

P O’Brien: Well I used to be on large amounts of Verapamil which is like a blood pressure, a heart pill, I believe, and it also helps with cluster headaches. So we’re now going on to a treatment which is quite specialised in that it’s small doses of Lithium, which frightened the life out of me because it was used to treat depression and things like that.

However, we’ve been told by our specialist that, you know, Lithium does all sorts of things for different people, so I had the impression it was going to play with my mind and things like that because it’s linked to depression and it’s nothing like that at all. It basically helps how active the brain is at certain times so for people with cluster headaches a little bit of Lithium can do some good but then I have to go and have blood tests and things like that; it’s a treatment that has to be closely monitored. And then because I’ve had cluster headaches for so long, to give these other treatments an opportunity to work, we need to try and switch them off for four or five weeks because my body’s got in the habit of having a headache. So we’re trying to switch them off for 4 or 5 weeks.

Evans: Switch off the medication.

P O’Brien: Switch off the pain, switch off the cluster headache.

S O’Brien: So today…

P O’Brien: So today I’ve had an injection in the back of the head…

S O’Brien: …a nerve blocker…

P O’Brien: …which is a nerve blocker. So I’ve had that today and now we’ve got to wait and see what effect that has. So we’re hoping that this nerve blocker injection…

S O’Brien: …changes the signals in his head…

P O’Brien: …is going to calm everything down rather than change them, I believe, it’s gonna calm it all down. So hopefully I’m going to get five or six or even eight weeks off from having a cluster headache, which will hopefully give the new treatment an opportunity to get a hold and work.

Evans: You were saying that it’s become unmanageable over the last couple of months. How does that impact on you?

P O’Brien: Well I’ve got a business, so I’m better off than some, I suppose, in terms of I’m my own time manager. So it’s good in that respect. But the biggest difference for me is that when I used to just get them at night, nobody knew I had them. We didn’t tell anyone because it wasn’t important. It was just something between us at home who knew that I…

S O’Brien: You don’t like the fuss, do you? You don’t want people coming up to you…

P O’Brien: No, I don’t want people feeling sorry for me and asking me if I’m alright, I just want to…I’ll get cluster headaches but I just want to get on with me life. I still just wanna be me; I don’t want everybody asking me how I’m getting on.

S O’Brien: But people who are aware of it are constantly going, ‘Oh, are you alright?’

P O’Brien: Because I don’t think of it that I’m ill – because I’m not ill, I just suffer from cluster headaches. Now in fact, if somebody’s ill, then you want… maybe they want sympathy, and people keep going, ‘oh, how do you feel now’ and people like that. And it’s reassuring; it’s almost a pat on the back. But suffering from cluster headaches – I can only speak for myself – I don’t want people’s sympathy. I don’t want to talk about it. Because it’s not an illness that’s going to kill me or anything, it’s just an unpleasant thing that happens to me. So I like the idea of people not knowing, really. It’s better because they don’t keep asking questions.

S O’Brien: You’ve got a quick treatment now as well. You have an injection, so when he gets a headache he injects himself and the headache’s gone, normally within 10 minutes, which is really good. So we just carry medication around with us wherever we go, don’t we? If ever we go out you’ve got some and I’ve got some. And then if Phil does get a really bad headache he’ll just go off and inject himself and within 10 minutes it’s gone.

P O’Brien: Yeah, so this new treatment is good. I’m saying new treatment – this is a treatment that was offered to me three or four years ago, and I didn’t like the idea of injecting myself, because – this sounds weird – what happens is, I was told that I could have these injections and they gave me some. And I went home pleased as punch, ‘I’ve got these new injections, I can’t wait for my next headache to see how good it is.’ And it becomes a little bit like that, y’know, you almost want try it out. And I got a headache which made me flustered and agitated, so then I didn’t want to inject myself. I took the lid off and I’m, ‘oh I can’t, I can’t do that’ and so that went across the room because I’m agitated, [laughs] big handfuls of painkillers and it went on. So I had these injections that I didn’t want to take… [S O’Brien: They’re brilliant.] So, and now eventually I’ve seen someone here and they said, ‘You’ve really got to try these things. You’ve got to… you’ve got to cope with it, you’ve just got to have this injection.’ And now I have the injections and they’re brilliant, aren’t they? They’re a lifesaver.

Evans: Phil and Sue O’Brien who I met at the National Migraine Centre in London. We’ll come back to them to end this edition of Airing Pain in a moment. But let me just remind you that if you’d like to put a question to Pain Concern’s panel of experts or just make a comment about these programmes, then please do so via our blog, message-board, e-mail, Facebook, Twitter and of course pen and paper. All the contact details are at our website, which is Pain Concern, one word, painconcern.org.uk. And you can download all the editions of Airing Pain from there too.

P O’Brien: We deal with it as a pair, as a couple, really.

S O’Brien: In the beginning I felt really useless because we didn’t know what it was, and Phil would pace up and down and be out in the garden at three, four in the morning and he’d be really irritable. So I’d sort of stay away from him. I didn’t know whether to help him or to stay back. But now we’ve just got an understanding. I do what I do and you do what you do and if anything changes he’ll let me know if he wants anything else.

P O’Brien: The way I’ve been told today that after a period of time it can just go away. And I await that day. [Laughs]

S O’Brien: Definitely.

P O’Brien: Really.

Contributors:

Professor Barry Sessle, Faculty of Dentistry, University of Toronto
Dr Amanda Williams, Reader in Clinical Health Psychology, University College London
Phil and Sue O’Brien.

How gender can influence experiences of pain, and living with cluster headaches

This programme was funded by an educational grant from Pfizer.

Contributors:

Dr Barry Sessle, Professor in the Faculty of Dentistry at the University of Toronto
Dr Amanda Williams, clinical psychologist, University College London
Phil and Sue O’Brien, living with cluster headaches.

What is a pain management programme? We find out more with the patients and staff on the Glasgow programme

To listen to this programme, please click here.

Prefer a PDF?Download

Airing Pain sheds some light on pain management programmes: what they are, and how they can help. Paul Evans pays a visit to the Glasgow Pain Management Programme where he talks to health professionals and patients. The programme’s clinical leader, consultant clinical psychologist Martin Dunbar, explains how his team help patients rebuild their lives despite continuing to experience pain.

We hear patients on the programme speak about how they have benefited from sharing their experiences and gained a better understanding their pain and Lyn Watson, the programme’s specialist nurse, talks about how she helps patients manage their medications and get the most out of medical appointments.

Issues covered in this programme include: Patient experience, residential programme, multidisciplinary, neck and shoulder pain, anxiety, peer support, medication, drugs, managing appointments, fibromyalgia, depression, mindfulness and relationships.

Paul Evans: Hello, I’m Paul Evans and welcome to Airing Pain, a programme brought to you by Pain Concern, the UK charity providing information and support for those of us who live with pain.

This edition is made possible by Pain Concern’s supporters and friends. More information on fundraising efforts is available on our Just Giving page at painconcern.org.uk.

Evans: In today’s edition of Airing Pain we’re responding to questions Pain Concern received about pain management programmes – what they are, and how they can help. Not all pain management programmes are the same: some, like the one at Bronllys Hospital in mid Wales – featured in programme 5 and still available to download at painconcern.org.uk –are residential; others may be run on a day per week basis, say over several months. Now, the Glasgow Pain Management Programme is run over 12 weeks and I paid them a visit where the first person I spoke to was its Clinical Lead, Consultant Clinical Psychologist Martin Dunbar…

Martin Dunbar: It aims to improve the quality of life of people with pain and explicitly we understand we are unlikely to make much improvement to the pain itself. Often the rest of their life has to some degree fallen apart whilst they’ve been pursuing treatments and strategies to help reduce their pain and we help them find ways to kind of build their lives back up again.

We call it a ‘values-based and acceptance-based programme’, so the focus is on looking at things that matter to the patients, getting them to think quite hard about that and the way they’re not living the life they wanted to live or that they would choose to live because of their pain. And then we help them set some goals to work towards getting some of that life back. There’re physiotherapists and psychologists and some medical and nursing input and a lot of that is around helping reduce the barriers to getting those important bits of their life back.

Evans: So you’re not curing them then?

Dunbar: We’re not curing them, no. We have evidence to show that their pain doesn’t actually improve – this is in line with our expectations – but what does change is that people are more active and we have evidence of that and they are more confident around their pain, they have a better understanding of it and they are happier and less anxious generally.

Thomas: I’m Christine Thomas, I’ve got neck and shoulder pain but it’s never been diagnosed. It just came on spontaneously – initially I thought I was having a heart attack because the pain was down my left arm. I lost the use of my left arm – nerve pain – couldn’t even hold a cup of coffee, let alone life it up to my mouth. That was two and a half years ago. I’m still employed, but I haven’t worked since the day it happened and it’s completely changed my life.

Evans: How did it start?

Thomas: I had pain across my collar bone and I was going to go to see my GP to get it checked out and that day everything just flared up and I got sent straight to hospital. They put it down to stress for the first six months, so I didn’t get properly looked at until my own GP put things in motion.

I’ve had MRI scans, x-rays and nothing’s shown up at all. They’ve said I’m one of the five per cent they’ll never be able to diagnose. It’s difficult because, particularly with neck pain, nobody really believes you. Officials don’t believe you. I don’t receive any benefits because I’m not sick enough, I’m not in enough pain. I can’t get people to believe me, even though they can see that I can’t do anything, they’ll not say, ‘right, you qualify for this benefit’.

Evans: So how did you come to be referred to the Glasgow Pain Management Programme?

Thomas: Through the Pain Clinic at Stobhill Hospital in Glasgow. They referred me.

Evans: And what is it doing for you?

Thomas: Oh, it’s great. Meeting other people who have exactly the same side effects and knowing that it’s not just me. It’s made me more confident about explaining to other people that this is just part of having pain and that I’m not the only one. And that constantly getting pushed to see other doctors and other specialists by family… that they don’t sort of realise that I’ve done everything that I can.

Lyn Watson: Last time we talked about the different types of medication, how they should be used, what they can be used in conjunction with… those kinds of things. This week, what we will do is we will talk more about how to manage your medication effectively and also to talk a little bit about if you were ever to rationalise your medication, ‘cause very often, when we take medication for a long time, we almost get a wee bit kind of complacent – over the years things get added in and things get added in a little bit more… I think it’s very beneficial every so often just to kind of have a review of what you’re taking and what you’re taking it for and how effective you think it is.

Watson: My name is Lyn Watson and I am the nurse with the Glasgow Pain Management Programme. My biggest responsibility, I guess, is to deliver some of the presentations, particularly more medically-orientated ones, medication-orientated ones, sorry, deliver a couple of talks on medication and how to optimise it. I give general information on medication as a whole. I also give some general talks on managing appointments. I see patients individually if they have any specific medication issues.

Evans: You talk about managing appointments, what can you tell people about how to manage appointments, surely you just make an appointment?

Watson: Past experiences have probably made people quite anxious about getting information and receiving information from the medical profession, whether that be that GPs, nurses, physiotherapists or consultants within the hospital. That can cause a lot of anxiety, which can mean perhaps they don’t optimise their appointments when they have them. So we give them general advice – very basic advice – but it can often be quite helpful to enable them to get the most out of their appointments that they have.

Evans: What sort of advice?

Watson: Things like being prepared, having all the information they require written down. Very often when you go into an appointment, you get a little bit flustered, you forget things, so having things written down is very helpful. Particularly lists of medication – that saves a lot of time, which then means you have more time to discuss the issues you have. Taking people along with you if you find you’re more likely to forget things or you want a little bit of moral support. We say with that, make sure it’s someone you trust, perhaps someone that’s not going to take over the appointment for you, but somebody there to act as a support.

Very often you forget the information that’s given and it can be quite helpful to have somebody there who can remember another part of the information as well.

Evans: I suppose it might be quite easy to misinterpret what your doctors told you.

Watson: Absolutely! And that’s again where it’s quite helpful to have someone else there. They might perceive the information that’s been provided differently. Also, another way round is they can ask doctors, physiotherapists, nurses, whoever it is, to write things down for you, so that you can then go away and think about it with a more clear head. A lady gave an example of misunderstanding or perhaps misrepresenting the information – both her daughter and herself went in and heard exactly the same information from the consultant . She came out feeling quite downbeat, a little bit upset and her daughter came out feeling quite upbeat and when they discussed it, they actually realised that it could perhaps have been low mood, feeling anxious, all these things play a part in how we perceive information that’s provided for us.

Caroline McRory: My name’s Caroline McRory and I have fibromyalgia.

Evans: How long have you had that?

McRory: Three years

Evans: And how does that affect you?

McRory: It affects my whole life, the impact that it’s had. I was working, I was employed, then I had an accident to my shoulder. After I got an operation on it, a year later after that I had widespread body pain, sheer exhaustion and I didn’t know what was wrong. I had excruciating pain in my right ribs and I went to my GP and she referred me to a surgical doctor at the hospital who checked my kidneys, my liver, my gall bladder because of this right sided pain and everything was coming back normal.

Now this was very frustrating for me because I knew I had this wide spread body pain, sheer exhaustion and I do have arthritis in my back. I’ve had that for ten years and I could cope with that but this pain was different – it was controlling me, rather than me controlling it. The results coming back from the hospital was very frustrating, really depressing me and my family. Every test I went for, I came back home to my family and told them everything was fine. Don’t get me wrong, I was pleased that my internal organs were fine and then it took a year to say this is what is causing it – it was neurological pain, chronic nerve pain, polymyalgia but every one of these symptoms was related to fibromyalgia.

Evans: Can you describe the pain?

McRory: Oh, It’s excruciating, it’s like your whole skeleton is on fire – this is my personal experience – all my skeleton was burning. Shooting pains, stabbing pains – excruciating – I couldn’t walk, I could hardly take any steps, I thought I needed a chair to get about. You couldn’t get ready in the morning, you couldn’t get undressed at night without help because the pain was so bad and I mean from head to toe, every part of your body, your jaws, your elbows, every part of your torso. It’s very hard for me to accept, when I used to wear a pedometer and used to walk for miles, I can’t do that now.

Evans: We’re on the eighth day of the Glasgow Pain Management Programme – how is that helping you?

McRory: Well, it’s helped me, because when I was diagnosed with this at first, I felt very isolated. I felt I was the only person with this condition, suffering with it and then I was referred here, to the pain management and I spoke to the other people, it was like a weight was taken off my shoulders because I thought well I’m not the only one with this condition. The staff you know, the advice given, the information, has been very helpful to me and I feel uplifted since I came here.

Evans: How do people get on the programme in the first place?

Martin Dunbar: We only accept referrals from the secondary care pain service – that’s the hospital doctors who deal with pain… not just the doctors there, because it’s a multidisciplinary team, so we accept referrals from physiotherapists, psychologists and nurses who work in those teams as well – and it’s simply a case of filling in a referral form.

Evans: But should people ask for it?

Dunbar: Most certainly. We have had people approach us who are not in the pain service and we have to explain that they should go to their doctors and say they are interested in this self-management approach and I understand that I should go to the pain service first. We get their GP to flag up their interest in the self-management, so they don’t get caught up in a lot of medical treatments that they don’t particularly want, so maybe get referred to us more quickly.

Evans: How do you assess people to come on the programme?

Dunbar: We have a joint psychology and physiotherapy assessment – that takes about an hour and a half. Obviously, the referral, we get quite a lot of information about the patient from that so, we have a pretty clear idea of their history. We’re looking for different things from the assessment than maybe others assessments have. We’re trying to gauge people’s understanding of what’s happened to them, any unresolved issues they feel might be there, that might hold them back, people’s willingness to try different approaches, to maybe set goals, even in the context of having a crippling painful condition. How physically able they are as well and one of the things the physiotherapy assessment does is to make sure there are no treatable muscular skeletal conditions, which could be dealt with as well. So we are trying to maximise people’s benefit from the programme.

McRory: My quality of life is null and void as I feel I’m quite a sociable person and socialised at the weekends but now, because of the drugs, I can’t do that. I take my medication in the morning and take it at night and come 9 o’clock I’m ready for bed as I’m so tired, so that’s had a huge impact on my social life. Holidays, you think ‘oh no, I couldn’t sit on a plane for 2 hours or an hour, I’d be too sore, what about my medication?’ The first thing you think is pain, it really controls your life and I worked in a healthcare environment. It’s taken me up until now, two years to accept it because I couldn’t accept it. I kept thinking one day I will wake up and it will all be away but it never goes away, this is a last resort for me.

Evans: It’s a horrible phrase, the last resort. Do you think perhaps it should have been a first resort?

McRory: Oh yes, I think it’s probably too expensive.

Evans: I heard the expression earlier that this was a last resort for many people.

Dunbar: Yes, I don’t think it is. In fact, we’ve been encouraging our colleagues to refer people earlier in their journey. In fact, we’ve recently started a shorter programme as well for people who are earlier and as a consequence of not having pain for so long, they are usually less depressed and less disabled and limited by their pain and we have specific people to deal with people like that in the earlier stages. I think some of it is, there is a medical desire to diagnose, treat and cure people and those processes take time and patience frequently. If you can, obviously, get a diagnosis that will lead to a cure, obviously then patients are going to pursue that with all their efforts until coming round to the realisation and acceptance that maybe this isn’t going to change and that maybe other things need to be addressed, like their quality of life.

Evans: So acceptance is an important word.

Dunbar: Massively important. It’s a word with so many meanings, it has negative connotations for some of our patients and that has to be tackled head on. For some people see it as a sign of giving up. Our retort to that would be, you can continue to investigate further avenues of investigations and treatments but it really is diminishing returns. We demonstrate that to our patients by talking through their histories. There is another side of acceptance, which is more allowing the pain and suffering in and not getting caught up with that all of the time, and devoting all of one’s time and energy trying to minimise that pain and rather accepting and seeing if that pain can be lived with. Often to patients’ surprise, when they start to move down that acceptance road they realise, actually it doesn’t get any worse but it allows me to do much more down other avenues that are important to me. So that’s why it’ so important, it’s the initial stage really.

Evans: So do you find that the people who come on the course, have been to hell, I was going to say, they’d been to hell and back. They’ve come to hell if you like and now you are to find a way out of it for them.

Dunbar: Yes, it is about bringing them back into to life, I think, and our logo has this tree that’s starting to flower again – that would be our approach, yes.

Lisa: I’m Lisa and I have been living in this country for twenty five years and I was a lecturer. I started having this terrible pain four and a half years ago, I think, and I went from one physiotherapist and one doctor to another. I bought loads of shoes and cushions and goodness knows what. I spent a lot of money on all different treatments. Then last year I felt I couldn’t cope with my job and the pain was such a constant pain that I came to the point that I couldn’t cope anymore. I took early retirement and I thought that’s it and this led to quite a lot of depression because I didn’t really want to stop work. I’m not that old and could have stayed a year or two.

I really have to say I’m very, very thankful for this course because it changed me. When I retired, I was hanging around the house. I didn’t do anything so my body doesn’t have to move – I put on weight, I became more and more depressed, I didn’t go out anywhere. I was just stuck at home and thought ‘I’m so old now’ [laughs].

Vera Elders: I’m Vera Elders. I’m Assistant Psychologist on the Pain Management Programme in Glasgow.

Evans: You took a mindfulness session didn’t you?

Elders: Yes,

Evans: Tell me what mindfulness is?

Elders: It stems from a Buddhist practice. It’s really about becoming more aware of yourself, of your own physical sensations, emotions and not only gaining an awareness of yourself but also accepting all the physical sensations, emotions and not judging them. It sounds quite abstract in a way but I suppose in a day and age when we’re all bombarded with lots of different stimuli all day long, I think quite often we forget to be in the here and now.

Evans: I don’t understand what you mean by not judging your emotions and physical sensations.

Elders: It’s a difficult one isn’t it? I think quite often we get stuck in loops of ‘I should be doing this’ or ‘I should be doing that’ or ‘what will this other person think about me?’ And you can spend an awful lot of time struggling with those thoughts and expend a lot of energy, mind reading or fortune telling and sometimes by just allowing the thoughts to be present and not judging them, not spending time warring with yourself and just letting them be and moving onwards, can give you a bit of space to be here and now.

Evans: So the session you took with the participants of the Pain Management Course, that was very much being in the here and now with your breathing?

Elders: Yes, so we do a number of practices that perhaps take a little bit longer but of course we’re all plagued with our own thoughts and our minds wander, so sometimes it can be difficult to bring our thoughts back to the exercise. I personally, find it hard to go straight back into an exercise if I’ve been wondering what I’m going to have for tea tonight so sometimes a breathing exercise is a nice way to anchor yourself back, as it’s often easier to focus on the breathing first and once you’ve got back into that rhythm, you can get back to whatever exercise that you were doing.

We do everything from mindful walking, to mindful exercise to mindful eating. We do a body scan, a body awareness, which is a practice where you focus first on some of the unpleasant sensations of your body, followed by focusing on some of the pleasant sensations, which can be quite nice because if your focused on all the negatives, sometimes we forget that we have there are other parts of your body: ‘actually my left arm feels quite nice today’ [laughs]. So we’re asking a lot from people to focus on the pain.

Geraldine MacVicar: I’m Geraldine MacVicar. The pain has been a problem for some few years.

Evans: What’s the cause of the pain.

MacVicar: They say there’s some sort of twist of the spine. I don’t think they really know themselves but it’s constant. It limits your quality of life.

Evans: And how long have you had this pain?

Geraldine MacVicar: Since 2007

Evans: And it’s taken five years…

MacVicar: To get to here.

Evans: What are they teaching you here that you didn’t know before?

MacVicar: Even to manage your anxiety, your mindset, how you approach things, not to be fearful as much as I had been. Though I find wee bits have been helping me just in my thought processes and that’s been making a bit of a difference.

Margret Boyle: Hi, I’m Margaret Boyle and I’ve had pain for about fourteen years now.

Evans: So it’s a twelve-week pain management programme?

Boyle: Yes.

Evans: And you are on week eight, three quarters of the way through. What have you got out of it so far?

Boyle: I can’t say a lot, I’m still in pain every day. I had an accident. I did a back flip and tore all the ligaments in my neck and right across my shoulders. The mindfulness is quite good. I work full time as well, so I don’t have a lot of time to practise all these things, so it’s probably my fault as well, I don’t make a lot of time.

Evans: Do you think it would teach you to stop saying it’s your fault?

Boyle [laughs] I don’t know, it’s a positive wee course. I’ll always say to people I’m not getting anything out of this but the people who know me, my family and friends say I am. They can see a slight difference.

Evans: So what can they see?

Boyle: I’m probably a bit more positive, confident. I’m probably a wee bit more outgoing than I was. It’s hard to put your finger in it but you feel something.

MacVicar: I think maybe in the first few weeks the way they were talking, it was like: ‘This is not really for me. I’m not really getting into this.’ But in the last two weeks it’s at a point that I’m picking it up but as you were saying, you think it’s maybe not making big differences at this point in time but I think even being in work would make me really anxious and stressed on going home. Now, in the last two weeks, I think, ‘I don’t care’.

Boyle: My boss says to me and I work in customer services, we get a lot of cheeky people and the past couple of weeks she like ‘you’re very calm’. It staggered me because in the past I used to take it personally the comments that would say.

MacVicar: Were you a meek one?

Boyle: Very, very meek [background laughter].

MacVicar: We can all see a big change in you, maybe you can’t, but we all can.

Laura McClaren: I’ve had back pain, chronic pain for about seven or eight years now.

Evans: You were saying you can see the difference in Margaret. What can you see at the end of week eight that wasn’t there at the start of week one?

McClaren: Probably that she is willing to listen, ‘cos you weren’t in week one. That was the thing, in week one you knew it wasn’t for you at all and out of us all I thought you might be the first one to go.

Boyle: Did you?

McClaren: Yes and the ones that have been and gone, I thought might have stayed.

Patient: You’re always smiling, yes you are. It makes a big difference.

Evans: I was speaking to someone on the course earlier and I started talking to her and she said she wasn’t getting much out of it. Then she suddenly said, ‘ Oh, but my family and friends do’. Partners suffer with chronic pain as much as the people with chronic pain.

Dunbar: That’s definitely fair to say. It is something we address here. We address it in a number of ways, well the patients address it principally. Early on in the programme, we get people to think about what matters to them and as you might expect time and time again, family relationships come up as a part of that. People say to us ‘that’s the area that’s not working very well in my life, it really bothers me it’s not working’. We go on to get people to set goals and kind of try to and set those bits of their life back on track. And that can be things like spending more time with their partners.

We had a lady recently – her goal was to have a weekly date night with her husband. She felt that her marriage had suffered so much because of her pain problem. So those kinds of things frequently come up like taking grandchildren to the park might be one of their goals; doing more for my husband, so that he doesn’t have to do so much around the house. These kinds of goals are set by patients on the programme time and time again.

We have also recently started an information class for family and friends of people coming here. Principally, with the aim of helping them to understand what their loved one is going through and giving advice on how they can help them. But I’m sure they get some benefit from that contact with us as well.

Evans: Do you keep track of people after they have left?

Watson: Once they complete the twelve week programme, we invite them to return three months later for an individual review session, where we catch up with how their getting on, the different things that we’ve talked about on the programme but also to talk about any issues they have, any difficulties. We tend to troubleshoot any problems they may have had, point them in the direction of other agencies that might be able to help them.

Then we invite them back again, three months later, for a six month top up session which is a kind of refresher, if you like, where a couple of groups will come along and we will go over a lot of the things we’ve talked about, find out how people are getting along. It’s also quite helpful and it enables them to see people from the group that they’ve been with and also people from other groups and learn from them as well.

Evans: Lynn Watson, Now before we end this edition of Airing Pain at the Glasgow Pain Management Programme, I just need to remind you of our usual words of caution, that whilst we believe the information and opinions given on Airing Pain are accurate and sound based on the best judgements available, you should always contact your pain professional on any matter concerning your health and wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf.

And don’t forget that you can still download all previous editions of Airing Pain from painconcern.org,uk You can also get CD copies form Pain Concern and all contact details are on our website. If you’d like to put a question to our panel of experts or even make a comment then please do so via our blog, message board, email, Facebook, Twitter and of course pen and paper.

So to end this edition of Airing Pain from the Glasgow Pain Management Programme, this is what some of the participants had to say about it:

Boyle: Oh I thought, ‘nothing’s going to help me’. But I did come and I have enjoyed it, as I say, meeting other people… the staff are excellent and the advice they have given has been very, beneficial.

McClaren: it’s been fantastic, it’s really made me change the way I think about things. The pain and mindfulness is really good, it help to calm you and take your mind off the pain, then you can go on and do other things and change the way I think about things in general. My family can see a difference in me and it’s all down to the people here.

Thomas: I know the pain won’t go but if I can just at least manage not to be as anxious, my pain level might just drop a wee tiny bit and maybe I’d have a bit more time for my son and some me time – not a lot because I know I can’t do so much just a time in the month that’s for me and that will be a big achievement for me.

Lisa: I hope that many more people can take part in this course, I really mean it.

Contributors:

Martin Dunbar, Consultant Clinical Psychologist, Glasgow Pain Management Programme
Vera Elders, Assistant Psychologist, Glasgow Pain Management Programme
Lyn Watson, Nurse Specialist, Glasgow Pain Management Programme
Lisa, Geraldine MacVicar, Laura McClaren, Margret Boyle, participants on the Glasgow Pain Management Programme.

What is a pain management programme? We find out more with the patients and staff on the Glasgow programme

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

The programme’s clinical lead, consultant clinical psychologist Martin Dunbar, explains how his team help patients rebuild their lives despite continuing to experience pain. We hear patients on the programme speak about how they have benefited from sharing their experiences and better understanding their pain and Lyn Watson, the programme’s specialist nurse, talks about how she helps patients to manage their medications and get the most out of medical appointments.

Contributors:

Martin Dunbar, Consultant Clinical Psychologist, Glasgow
Lyn Watson, Nurse Specialist, Glasgow Pain Management Programme.

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