Pain Concern

Watch your step: with 80% of amputations preventable with the proper care, we discuss diabetic neuropathy & why we should treat our feet

This programme was funded by a grant from The Schuh Trust.

There are around 4.5 million people living with diabetes in the UK, and every day more than 20 leg, foot or toe amputations are carried out as a result of diabetic neuropathy. This is particularly shocking, as four out of five of these amputations could have been avoided with proper care.[1]

People with diabetes are often bombarded with advice on diet and exercise, however as with any long term condition it can affect all aspects of life. In this episode of Airing Pain we talk to Linda McGlynn from Diabetes Scotland and clinical specialist physiotherapist Ben Davies.

Linda explains how diabetes affects the nervous system and why it’s so important to look after our feet. Ben describes some the results of his research into support for those with painful diabetic neuropathy, and why diabetes specialists left feeling “clinically impotent” should look towards the pain community for inspiration.

Issues covered in this programme include: Amputation, diabetes, diabetic neuropathy, diet, exercise, foot pain, gabapentin, heart disease, limb pain, loss of sensation, neuropathic pain, numbness, pregabalin and strokes.

Contributors:

Ben Davies, Clinical Specialist Physiotherapist in Pain Management
Linda McGlynn, Patient and NHS Engagement Manager at Diabetes Scotland.

More information:

[1] Figures courtesy of diabetes.org.uk/putting-feet-first & diabetes.org.uk/Professionals/Position-statements-reports/Statistics/Diabetes-prevalence-2016/.

We talk to campaigners, MPs, patients and specialists about the most common form of inflammatory arthritis: gout

To listen to the programme, please click here.

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Gout is the most common form of inflammatory arthritis and affects 1 in 40 people in the UK. So why do we still see it as something that exists only in the pages of Victorian novels? In this episode of Airing Pain we go inside the Houses of Parliament and speak with MPs, clinicians, patients and UK Gout Society members to find out why.

What is gout?

Gout is a type of arthritis caused by a build-up of uric acid crystals in the joints, most frequently the feet. As with many conditions, flare-ups can be brought on by a number of factors including lifestyle, stress and diet. Some people, however, have a genetic predisposition. Paul Webber and Alan Hughes both suffer with gout, describing the pain as being repeatedly being kicked in the shin and worse than a red-hot poker.

What’s the treatment?

Treatments for reducing pain during attacks include icing the joint and taking medications, however there are also long term treatments. There are lifestyle changes we can make, such as consuming less yeast-rich food and drink, staying active and drinking plenty of water. Despite being relatively inexpensive to treat, gout comes at a great cost to the economy and society, as the Chief Executive of ARMA, Sue Brown, highlights.

Consultant Rheumatologist Dr Jonathon Rees identifies a lack of awareness in primary care, with cases often going undiagnosed. Paul also talks to Michael Snaith about his early gout and gender research at the UK’s first gender reassignment, and Lord Ramsbotham sums up perfectly why gout really is no laughing matter.

Issues covered in this programme include: Alcohol, arthritis, cardiovascular disease, chronic renal disease, diabetes, gender differences, gout, hypertension, joint pain, misconceptions, uric acid crystals and weight.

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

In March 2017, the UK Gout Society joined forces with parliamentarians, doctors and other charities to help raise awareness of gout: the most common form of inflammatory arthritis which affects one in forty people in the UK.

The event was held in the House of Commons, and was hosted by Jim Shannon MP for Strangford, Northern Ireland and DUP spokesman for Health; to launch the Shout about Gout campaign. Gout or rather those who suffer gout have been the butt of jokes, cartoons and caricatures for years, so the launch of Shout about Gout came into the headline, ‘Gout: No Laughing Matter’.

Jim Shannon: So today’s event is to get rid of some of those cartoons; some of those caricatures we had in the past. Here is one where King Henry VIII is lying in a chair, about seven stone bigger than he should be with bunions on his feet the size of turnips, with the stilton and the port sitting close by. While that is the perception of some people have, it’s time we put the facts on the table. It’s time we told people what it is really about.

We also want to raise awareness because it is time that we did so, in relation to parliament and the members. And how government and the NHS can best address the issues, making the resources available, raising awareness that this is important. It’s quite an honour to be a sponsor, there is nothing quite, I believe, as salubrious as the House of Commons to come and have an event, but at this stage I am going to ask someone with much more knowledge than me, Professor George Nuki, to come along and tell us some of the facts of the matter and I want to hear this as well.

Professor Georg Nuki: Thank you very much Jim, particularly for hosting this event. I would like to thank everyone on behalf of the UK Gout society for coming today. Gout really isn’t a laughing matter, it’s not a laughing matter for the patient, but it’s also not a laughing matter, at the moment, for the government either.

So what is gout? Well, gout is a relatively simple condition really. It’s a crystal deposition disease, caused by crystals of uric acid forming in the tissues. And they form in the tissues when the levels of uric acid in the blood are too high. It is caused by a combination of genetic determinants, but also by life style issues. The epidemic that we have at the moment of obesity, which is associated with type 2 diabetes, but also with hypertension, with chronic renal disease as well. All these conditions are associated.

We have discovered in the very recent past really, by modern imaging methods, that actually at the time one gets one’s first attack of acute crystal inflammation, one of the most painful experiences that one can have really, that it is already an established chronic disease. At that point there are crystals in the tissues which are causing low grade inflammation which may be associated with cardiovascular disease, diabetes, renal disease as well.

The extraordinary thing is we have known about it and how to treat it pretty effectively for at least fifty years, and there are now new treatments as well that make it possible to treat people with more difficult cases of gout. But despite us being able to potentially cure it for all this length of time, it’s increased in frequency and the prevalence of it now is one in forty people in the population; more common than rheumatoid arthritis which people think of as the archetypal inflammatory disease. And it causes a great deal of physical disability but also loss of earnings, it has enormous economic consequences.

For the National Health Service it has tremendous implications because whereas admissions to hospitals now, with rheumatoid arthritis, have gradually fallen with modern treatment, with gout, not only has the frequency of the disease increased, but the number of people being seen in Accident and Emergency, being admitted to hospital with gout is constantly increasing.

There is no reason for this and we should really concentrate on treating the disease to a target level, that by getting the uric acid in the blood down below the level at which crystals will form and at a level in the tissues when the crystals will dissolve again you can actually, potentially, completely cure this disease. But we know at the moment that less than half the patients are being treated in primary care and actually receiving uric acid lowering treatment. And in less than ten percent of the patients are the uric acid levels in the blood actually being monitored at all.

Now there has been a very recent study funded by the Arthritis Research UK led by Professor Michael Doherty in Nottingham where they have done a randomised controlled trial looking at some five hundred patients with gout and comparing patients who are seen and followed up by nurses with patients receiving routine standard care as it is at the moment. And showing that with those patients with nurse-led treatment have actually managed to achieve the target that one is looking for in better than ninety per cent of the patients, compared with less than fifty percent in the people being given routine care at the moment. And that has been associated with better patient reported outcomes; so less pain and so forth. There is going to be a health economic analysis as well, which I am sure will highlight the differences. So gout isn’t really a laughing matter for any of us; thank you.

Paul Webber: My name is Paul Webber, I am here in the Houses of Parliament, Dining Room A, with the UK Gout Society as I am a gout sufferer.

Alan Hughes: My name is Alan Hughes and I am here for the same reason.

Paul Evans: You both have gout, what does that mean to you?

Paul Webber: It means when I get an attack, a lot of pain and not necessarily being able to do all the things I would like to do when I don’t have gout.

Paul Evans: What does the pain feel like?

Paul Webber: If you have ever played football and not worn shin pads and had someone repeatedly kick you in the shin and you are unable to move; that’s what the pain feels like.

Alan Hughes: I will go along with that, but my way of describing it is ‘take a red hot poker out of the fire and stick it in the affected joint and probably you will have some pain relief’.

Paul Evans: Now you are both defying all the rumours about what gout is, you are both fairly young people, you are not the old doddery people in the cartoons.

Alan Hughes: No, gout has been laughed at over the years, you know. It’s a rich man’s disease, too much rich living, too much red wine, too much port you know. And I find that not to be the case and I have proven it over the fifteen, twenty years that I have had it. I was told early on that tomatoes is a bit of a trigger for gout, so I have stayed off tomatoes over the years and I have proved that, tomatoes if I eat tomatoes which is in almost everything we eat, then it can trigger an attack.

Paul Evans: Do tomatoes do the same thing for you?

Paul Webber: No, I was quite interested and surprised to hear that but I have not necessarily thought that my gout was associated with food. For me I believe that my gout is firstly hereditary, my grandfather had it, and also I think it is a little bit stress related. So if I am running around at work, trying to balance work with children that sort of thing, quite often I will have an attack and I will look back at the week I have had and I will think that I was a little bit crazy in terms of the commitments that I have made with just running a family and trying to do my job.

Dr. Tim Tait: My name is Doctor Jim Tait, I am a Consultant Rheumatologist working in Sheffield. Gout is an inflammatory condition in its acute sense but it also has a chronic phase. So it’s the acute attacks that people notice mostly which is caused by a crystal forming within the joint, that the body then reacts to. An acute attack is incredibly painful: it normally starts in the foot but can affect any joint in the body, usually lasts about ten days to two weeks and then settles down of its own accord or with treatment.

On the back of that there is a chronic phase: people who get acute attacks may get one or two a year, may get many, many more. But the damage comes from the repeated acute attacks and the accumulation of the crystals in the joints and other tissues and it’s that that the treatment is aimed at lowering.

Paul Evans: So let me just talk about that. You say crystals form within the joints, uric acid. What is uric acid? And what has that got to do with gout?

Dr. Tim Tait: Well uric acid is the product that is in the blood stream and it is produced by a breakdown of tissues or energy production within the body and by ingestion of its precursor, which are purines. After a certain amount [of uric acid] is in the blood you can’t dissolve it and it spills over to the tissues where it forms a crystal called monosodium urate, and it is the crystal form that causes the acute attacks.

Paul Evans: What treatment is there?

Dr. Tim Tait: Well, there is treatment for the acute attack, which is painkillers, anti-inflammatory, steroids, colchicine drugs like that, drugs to reduce inflammation and get rid of the acute attack. There is then longer term treatment to try and lower the level of uric acid in the blood stream and in doing so – if you lower it below the blood threshold – then the crystals in the tissue will start to dissolve back into the blood stream and eventually dissipate. And it’s this longer term treatment that is aimed at treating the gout itself.

Stuart Reed: My name is Stuart Reed the Patient Trustee of the UK Gout Society which means that I have gout, or I had gout, or I may get gout again in the future. The week before I had gout I had lots to eat and perhaps brought it on – steak, liver and bacon, lamb, curries, jellied eels, lashings of red wine, I like a drink – and three days later I had a ferocious attack of gout that laid me up in bed for a week. I was on crutches for a week after that and then I had a limp for a month. So I said; no more, I have changed my life style. I don’t drink, I eat lots of fresh vegetables and fruit. I don’t eat meat that might raise my uric acid levels and that’s what I hope to continue.

Paul Evans: So it’s the management of gout, the self-management of gout, that maybe patients have their own responsibility to look after themselves perhaps.

Stuart Reed: I think you are right there, yes. I would agree with that.

Dr Jonathan Rees: My name is Jonathan Rees and I am a Consultant Rheumatologist. I am based at Addenbrooke’s at Cambridge. So Rheumatologists are the consultants who treat gout and have the biggest interest for them, although of course it is often managed more frequently in general practice as well.

Gout is a huge problem and burden but it is relatively simple to treat and you can make an incredible difference to people’s lives very, very easily with simple treatments. Unfortunately it has not got the profile it deserves. If only there was a little bit more resource or a little bit more education of our colleagues in primary care we could really manage this condition much more effectively, make a huge difference to many people’s lives. That would be a fantastic thing to do.

Paul Evans: So how do you bridge that gap?

Dr Jonathan Rees: Gout is under diagnosed. When it is diagnosed it is under treated. So I think the most important thing is working together, perhaps to produce new guidelines and to work with our colleagues in primary care to maybe just to help them to stop and think: ‘Is this gout?’ If it is gout: ‘What is the best way we can manage this? And how can we really help our people and not just improve their gout but really put them into complete remission?’

It is probably the most painful thing a guy can get and it is very easily treatable and very easy to improve those pain levels. And there is nothing more satisfying in medicine than taking someone out of pain.

Dr Adrian Dunbar: I am Adrian Dunbar, I am very recently retired, but I used to work in primary care as a muscular-skeletal specialist, [a] chronic pain specialist.

Paul Evans: Now you were a GP, so you were working in primary care, you would have been the first port of call for somebody for who it is told needs help. So what do you do for them?

Dr Adrian Dunbar: Well, you make the diagnosis and that’s not very difficult and you give them acute treatment, which is fairly straightforward. The important thing is that you need to see them again.

Paul Evans: Acute treatment means that you just attack the pain as it is happening now.

Dr Adrian Dunbar: Yes, and you need to see the guy again within a few weeks, to check the symptoms have settled down, but also to start investigations and long term treatment if your diagnosis is confirmed.

Paul Evans: You mentioned earlier that it is a perfect condition for general practice. What do you mean by that?

Dr Adrian Dunbar: First of all it is not difficult, it’s not very high tech: it doesn’t require much apart from blood tests and regular treatment. It’s a relatively safe, cheap drug in the first instance that doesn’t cause very many adverse effects: few people are allergic, not very many, so there is no reason why GPs can’t control the vast majority of patients with gout.

Paul Evans: It seems to me that even if you threw a lot of money at it, it doesn’t need that money.

Dr Adrian Dunbar: It does not need a lot of money, it needs awareness. In primary care there was this thing called Quality of Outcomes Framework, which essentially told GPs what they needed to be doing and to get the disease taken seriously it should have gone in the QUOF, like high blood pressure, high cholesterol, yes it is just the same kind of problem. Hyperuricemia should be treated just the same as hypercholesterolaemia, it needs to be reduced.

Sue Brown: I am Sue Brown and I am Chief Executive of Arthritis & Musculoskeletal Alliance, ARMA. I am here today because part of the role of ARMA is to make sure that we support all of our members in the work that they are doing, so it’s brilliant that Gout UK Society has this reception here to raise awareness of something that I think people know very little about.

Personally I was surprised when I started work at ARMA and found out just how common gout is. My background is; I have got twenty years’ experience in health and social care policy, but particular experience of working in alliances so one of the things I am really passionate about is the way groups work together and speak with one voice, they have so much more power than if each of us tries to do it by ourselves and that really what ARMA is about.

Paul Evans: Who are you speaking to? And what are you telling them?

Sue Brown: Well, who we are speaking to is everyone who has an impact on the services and support to people who have muscular-skeletal conditions. And what we are telling them is muscular-skeletal conditions are really common, really important, often misunderstood and possibly given less priority than they should be.

Paul Evans: I will bring out my little cynicism mode for just a moment and if I said why alliances – chronic pain alliances, whoever – need events like this [it’s] because there is one thing that really gets things done: the cost of the condition to the Exchequer.

Sue Brown: Well certainly muscular-skeletal conditions cost an enormous amount to the Exchequer. That’s partly the cost to the NHS for treatment, but it’s also the cost of people without treatment that could be in work but are not in work because they are not getting the treatment they need, and that obviously costs the Exchequer a lot in terms of lost tax revenue.

Paul Evans: But it’s not just lost tax revenue, it’s people who are in work, working below par, if you like, to companies. They are not filling their jobs, there is a societal cost to all these conditions.

Sue Brown: Absolutely, there is a societal cost in terms of people who could contribute more to their companies and to the economy. There is also a societal cost in terms of people who maybe could be caring for grandchildren but are not able to. All the different ways in which we contribute to society and to our communities are impaired if you have an untreated and unaddressed muscular-skeletal condition.

Dr Michael Snaith: My name is Michael Snaith I am a retried Rheumatologist. I was a Research Fellow and did a study on gout in the Kennedy Institute in 1969. Secondary gout is very much associated with lifestyle, so primary gout really has nothing very much to do with lifestyle, it has more to do with genetics. You can get gout and be a slim, non-alcoholic drinker, non-venison eater and still get gout. And you would say ‘’why the hell have I got gout because I am not a drinker or an eater.’’

But secondary gout is more likely to occur in people who over eat, over drink and are overweight, which is why particularly nowadays [when] you have an ageing generation, you should be addressing the issue of lifestyle-induced gout. Very, very important to treat patients with gout with tablets but it is equally important if they are overweight and have risk factors such as dietary excess, alcohol excess, and weight excess [that] they should be encouraged along those lines, as well as taking the tablets. It should be part of the government’s approach to obesity you know, corn syrup for goodness sake, corn syrup which is in American drinks, or was, induces high urate levels. These things occur; we know about them; it’s a societal approach as much as anything.

Paul Evans: So the lifestyle issues, many of them are well known – diet, keep your weight down, exercise, get your blood pressure down, this sort of thing – but are there things particularly associated with gout?

Dr. Michael Snaith: Well, drinking beer is more important than drinking port by a long way in terms of the population and weight. There are a few drug induced causes, but the most important issue regards to body weight and an intake of a combination of protein, offal particularly, meat proteins and alcohol associated with weight. On top of that, there is still the existing relatively small proportion of patients who have primary gout. They need treating with medication and that medication needs to be kept up, because if you don’t treat the uric acid level and get it down you will deposit crystals in lots of tissues – not just the joints, other tissues as well – so management of gout is multi-factorial. You really have to address the issue of the uric acid level and the body in which the uric acid level is elevated.

Paul Evans: Now, when you did your research, your MD back in 1969, what were you focussing on?

Dr Michael Snaith: Well focussing actually on a few interesting things like post- operative gout. There is an incidence – still is, there was then even more – incidence of people who develop gout having recovered from surgery. The reason for that is they get ketosis. Ketosis is when you start consuming fat because you are not getting enough calories in, you become acidotic and that retains urate at the kidney level.

The second very interesting one is who gets gout, men or women? The answer is men: why, what happens when a man becomes a man from being a boy? The answer is his uric acid goes up. Now at puberty a man’s uric acid rises, it’s not until the menopause that a female’s uric acid rises, so throughout their pre-menopausal life a woman has a lower level of uric acid than a man.

So ask yourself the question: how would you do a study to demonstrate the difference between men and women in terms of their uric acid metabolism? You choose men who are about to take female hormones. So we took advantage of one of the first – if not the first gender reassignment clinic in the United Kingdom – and studied men who were about to start oestrogen in order to [become] transgender and that was in 1969. That was fascinating and we showed quite clearly that if a man takes Stilboestrol, which is what was given those days, his urate drops.

Lord Ramsbotham: I am Lord Ramsbotham and I am a cross bench member of the House of Lords, I was a former soldier and then became Inspector of prisons for a time.

Paul Evans: And you have gout.

Lord Ramsbotham: I have gout, I got gout in 1982 and my father had gout before me and he told me he was leaving it to me and his grandfather had said exactly the same thing to him. Luckily my sons haven’t got it.

Paul Evans: When did it first appear?

Lord Ramsbotham: I was forty-eight, it appeared when I was visiting a Headquarters in Ireland. I slipped on the stairs and kicked my toe on the bannisters and thought I had broken my toe, and went to the doctor and he just roared with laughter and said ‘that’s gout’.

Paul Evans: And really that sums up why we are here today, that gout is no laughing matter.

Lord Ramsbotham: It’s no laughing matter, you know, I mean, I think the sooner it gets known to be the most common form of arthritis and is treated as such, I’m afraid the image of the red faced old colonel drinking port with his foot wrapped in red velvet… it’s got itself a bad name. And I think it ought to be regarded as something to do with arthritis and it requires a disciplined approach to it.

Paul Evans: And recognised beyond the world of comedy.

Lord Ramsbotham: Absolutely, it’s no laughing matter.

Lynsey Conway: Thanks again, Lords, Ladies and gentlemen for coming today. My name is Lynsey Conway, I run the Secretariat of the UK Gout Society. I just want to say a few words about our small but perfectly formed charity. We were established in 2002, the charity was established by George Nuki and Dr. Michael Snaith who I am delighted to see here today. You won’t be surprised to hear given the growing prevalence of gout, that last year we had over a quarter of million visitors to our website and three hundred thousand patient information sheets were downloaded, but yet gout is still misunderstood and under treated.

So what we would like you to do today and I think some of you already are, is to help us shout about gout: share your experiences about gout, demystify gout and the stigma that is attached to it; that it is an old men’s disease [for those] that swill port and eat copious amounts of venison, which it is not, given the age and range of the people who are here today and suffer. And to follow us on Twitter by shouting about gout, by using the hash tag ‘shout about gout’. So thank you very much again, thank you Jim particularly for hosting this for us, thank you very much indeed.

Paul Evans: For more details and advice on managing gout and the #shoutaboutgout campaign, go to the UK Gout Society website, which is ukgoutsociety.org. And as always whilst we in Pain Concern believe that information and opinions on Airing Pain are accurate and sound, based on the best judgement that is available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you, your circumstances and therefore the appropriate action to take on your behalf.

And don’t forget that you can download all editions of Airing Pain, both audio and transcripts from Pain Concern’s website which is painconcern.org.uk. I’ll leave you and the House of Commons with the words of Paul Webber and Alan Hughes.

Alan Hughes: It’s interesting today coming and talking to different people and Paul, who said that he seems to think it is stress related as well. I am a full time policeman; I deal with road death mainly, so my job is very, very stressful, so it could have something to do with it, maybe not, I don’t know. But it is great to come to something like this where everyone can share their views. And the feelings and the trips they have been on, to see if there is any common ground.

Paul Webber: And I am definitely going to try to cut out tomatoes to see if that has an effect.

Alan Evans: So you have established tomatoes have an effect on you, how do you manage it? You are in a full time job, a stressful job as you say, you are a police officer.

Alan Hughes: Yes, that is full time, and there is family life as well, it’s just trying to get the balance right, it’s self-medicating on the drugs I have been given and being very, very choosy on the foods I eat.

Paul Evans: Do they know at work that you have this condition?

Alan Hughes: Yes, yes, and I get mocked for it daily. Mocked for it because it is an old man’s disease.

Paul Evans: Absolutely, which is why we are here today to try and dispel that myth. You both started this in your mid-twenties

Paul Webber: One of the things I find particularly embarrassing is that when I am at work I feel that twinkle in my toes, I feel them tingling and I know that I have got a couple of hours before the pain really, really starts to kick in. I work in Canary Wharf: I catch the tube, I catch the train and then I have to walk. If I am in a situation when my toe is swelling up [amd] I’ve got my shoes on, everything in my brain is telling me to take my shoes off. I know full well I can’t take my shoes off – if I take my shoes off I won’t be able to get them back on. I might not have a pair of trainers there, I might not have a pair of flip flops there. And even if I have, try working in Canary Wharf and walking home with a suit and a pair of flip flops. You are going to be laughed at, those are the things that affect me most about having gout. It’s the embarrassment, it’s having a gout attack at work, it’s not being able to run around after my son.

Paul Evans: If you were speaking to somebody in their mid-twenties – you started having gout in your mid-twenties – to somebody today starting that journey, what would you say to them?

Alan Hughes: Speak to your GP, tell them everything and gather as much information out of them as you can. You know I think GPs aren’t aware of exactly the pain, they are happy to give out the pain relief, the anti-inflammatories, so it’s a simple quick fix for them. No, if you are suffering from it, look at the symptoms online, you can do that, no problem with the technology these days but then speak with your local doctor and highlight the problem.

Contributors:

Jim Shannon MP for Strangford
Dr George Nuki, professor of rheumatology at the University of Edinburgh
Paul Webber, person with gout
Alun Hughes, person with gout
Dr Tim Tait, Consultant Rheumatologist, Royal Hallamshire Hospital
Stuart Reed, gout sufferer and patient trustee of the UK Gout Society
Dr Jonathan Rees, Consultant Rheumatologist and Sports Medicine, Cambridge University Hospitals NHS Foundation Trust
Dr Adrian Dunbar, GP with a special interest in musculoskeletal medicine and chronic pain
Sue Brown, Chief Executive of Arthritis & Musculoskeletal Alliance
Dr Michael Snaith, retired Consultant Rheumatologist and trustee of the UK Gout Society
Lord Ramsbotham, cross bench member of the House of Lords and person with gout
Lynsey Conway, UK Gout Society Secretariat.

More information:

We talk to campaigners, MPs, patients and specialists about the most common form of inflammatory arthritis: gout

This programme was funded by a grant from The Schuh Trust.

Gout is the most common form of inflammatory arthritis and affects 1 in 40 people in the UK. So why do we still see it as something that exists only in the pages of Victorian novels? In this episode of Airing Pain we go inside the Houses of Parliament and speak with MPs, clinicians, patients and UK Gout Society members to find out why.

What is gout?

What’s the treatment?

Contributors:

Jim Shannon MP for Strangford
Dr George Nuki, professor of rheumatology at the University of Edinburgh
Paul Webber, person with gout
Alun Hughes, person with gout
Dr Tim Tait, Consultant Rheumatologist, Royal Hallamshire Hospital
Stuart Reed, gout sufferer and patient trustee of the UK Gout Society
Dr Jonathan Rees, Consultant Rheumatologist and Sports Medicine, Cambridge University Hospitals NHS Foundation Trust
Dr Adrian Dunbar, GP with a special interest in musculoskeletal medicine and chronic pain
Sue Brown, Chief Executive of Arthritis & Musculoskeletal Alliance
Dr Michael Snaith, retired Consultant Rheumatologist and trustee of the UK Gout Society
Lord Ramsbotham, cross bench member of the House of Lords and person with gout
Lynsey Conway, UK Gout Society Secretariat.

More information:

David Rogers, physiotherapist and co-author of Back to Life, explains persistent back pain and some simple exercises that can help

This programme was funded by a grant from The Schuh Trust.

Back pain causes more disability than any other condition in the UK[1]. It is the second most common cause of absence from work, resulting in the loss of four million working days per year[2]. This comes at a heavy price not only for the NHS, the Department for Work and Pensions, and the UK economy – reported to be costing each £480 million, £5 billion and £9.6 billion a year respectively – but for the increasing number of us who will experience back pain at some point in our lives.

Over 40% of over 50s go on to develop back pain[3], and with an ageing population it’s more important than ever that we know what we can do to prevent, reduce and manage this common but debilitating ailment.

Dr David Rogers is an Orthopaedic Physiotherapy Practitioner at the Royal Orthopaedic Hospital in Birmingham. In 2016 he co-authored the book Back to Life: How to unlock your pathway to recovery (when back pain persists) with Dr Grahame Brown. It breaks down complex-sounding terms and contains plenty of practical advice for managing and relieving back pain. David explains the ideas behind the book and the biopsychosocial model to Paul, who tries some 7:11 breathing and relaxation techniques.

Issues covered in this programme include: The 7:11 breathing technique, catastrophising, flare-up, lower back pain, muscle tension, pacing, physiotherapy, psychology, relaxation, sciatica, SMART system and visualisation.

Contributors:

Dr David Rogers, Orthopaedic Physiotherapy Practitioner at Royal Orthopaedic Hospital, Birmingham and co-author, with Grahame Brown of Back to Life: How to unlock your pathway to recovery.

More information:

Back Care
NHS Choices: back pain
National Ankylosing Spondylitis Society
To order a copy of David’s book, Back to Life, via Amazon click he r e.

[1] Figures from NHS Healthy Evidence Forum: nhs.uk/news/2014/03March/Pages/Back-pain-leading-cause-of-disability-study-finds.aspx

[2] Statistics from Back Care: backcare.org.uk/wp-content/uploads/2015/02/Back-Facts-for-Employers-Factsheet.pdf

[3] Statistics from Back Care: backcare.org.uk/wp-content/uploads/2016/11/Builders-back-pain.pdf.

David Rogers, physiotherapist and co-author of ‘Back to Life’, explains the biopsychosocial model and simple, effective ways to manage persistent back pain

To listen to the programme, please click here.

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This programme was funded by a grant from The Schuh Trust.

Back pain causes more disability than any other condition in the UK. It is the second most common cause of absence from work, resulting in the loss of four million working days per year. This comes at a heavy price not only for the NHS, the Department for Work and Pensions, and the UK economy – reported to be costing each £480 million, £5 billion and £9.6 billion a year respectively – but for the increasing number of us who will experience back pain at some point in our lives.

Over 40% of over 50s go on to develop back pain. With an ageing population, it’s more important than ever that we know what we can do to prevent, reduce and manage this common but debilitating ailment.

Dr David Rogers is an Orthopaedic Physiotherapy Practitioner at the Royal Orthopaedic Hospital in Birmingham. In 2016 he co-authored the book ‘Back to Life: How to unlock your pathway to recovery (when back pain persists)’ with Dr Grahame Brown, in which readers can find clear, practical strategies for managing and relieving low back pain. David explains the ideas behind the book, the biopsychosocial model and why it’s so important, while Paul tries some 7:11 breathing and relaxation techniques.

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

David Rogers: Health professionals often find it difficult to grasp this concept, that your thinking style can influence your rate of recovery. I am a physiotherapist and I was trained in physical approaches, but I’ve found that by applying these psychological approaches, although I’ve had no formal training at undergraduate level, it’s had a much bigger impact on helping people to recover than any physical factor that I have used.

Evans: According to statistics published by the charity Back Care, back pain costs the UK economy a staggering £37 million pounds a day, £480 million a year to the NHS, and £5 billion a year in disability benefits.

It’s the second most common cause of absence from work with four million working days lost each year, and 40% of over 50s go on to develop persistent back pain.

In 2016, NICE – that’s the National Institute for Health and care Excellence – updated it’s guidance on the management of low back pain and sciatica. Under the heading for ‘non-invasive treatments’ there’s advice on what not to offer, therapies that people may or not may not have found useful in the past. But noticeable is the inclusion of the guidance to ‘consider psychological therapies’, and that’s what I want to concentrate on in this edition of Airing Pain.

David Rogers is co-author with Dr. Grahame Brown of ‘Back to Life: How to unlock your pathway to recovery when back pain persists.’ David is an extended scope physiotherapist, that is, he has and uses skills that go beyond the normal practice of physiotherapy including spending time in clinics and taking investigations, but also developing skills in psychological approaches to rehabilitation. He works within the NHS and I met him at Birmingham’s Royal Orthopaedic Hospital where he established a functional restoration service for patients with back pain, combining both physical and those psychological treatments within an interdisciplinary team.

Rogers: I actually did a sports degree before I did physiotherapy, that’s the area that I wanted to go into, sports physiotherapist.

Evans: What is interesting about sports rehabilitation is that you are dealing with people who use their bodies, their muscles, their limbs, to a very high level, presumably. And many of the people you see now, I would imagine, are at the opposite end of the scale.

Rogers: Yes, and my training taught me that they were probably at the opposite end of the scale because of physical factors related to deconditioning, but I soon found out that often people’s poor performance relates as much to what they think about their pain, and what they do about it, rather than how deconditioned they have become.

For example if someone is told that bending is bad for you and they develop back pain, then they may avoid bending when they are encouraged to rehabilitate. And we know that avoidance is as much to do with fear, and beliefs about bending, than actually bending itself. So if we educate them that it’s safe to bend, and safe to twist, safe to move and lift, then often their confidence starts to develop. And confidence isn’t a physical factor it’s a psychological factor.

So it’s not just about how many marks out of ten you give it, it’s about how it makes you feel, what you believe about the pain, how you respond to it, what others tell you to do about the pain, how you prepare yourself for the pain, whether you avoid and it why you avoid it. So that isn’t to do with the pain itself, it’s to do with your attitudes and beliefs about pain. And we know from the evidence that those attitudes and beliefs are strong predictors of whether you make a recovery or not.

Evans: That’s a long list for people to address when they come in to a doctor or a physio with back pain, where do you start with this?

Rogers: It’s really helpful to listen to comments that patients might make to you, and they might be off the cuff comments that aren’t linked to any question you’ve asked them. So for example fear, a good way to identify is that a patient will say to you I’m worried that if I lift that box I will damage my back. Now that’s a fear avoidance belief.

Evans: But that’s what pain is all about isn’t it, pain is to stop you doing that because you will damage your back. If I come to you and you tell me I’ve got to go and do some ‘lifting therapy’ if you like, the first thing I will say to you is that I’ve got a bad back.

Rogers: Pain is a very useful danger alert system, it tells us when our body is in danger and tells us that we need to do something about it. There’s two key things that happen when we experience pain, we have a though of what does this mean, and another thought of what should I do about it. Often with pain, certainly with back pain, people are given unhelpful guidance and advice, that they should rest, take it easy, wait till the pains gone away, go and have a scan, and often this can delay recovery cause people are left in limbo. Because the question of what does this mean isn’t correctly answered.

If people with back pain don’t have any signs of serious disease, and there are some simple questions we can ask to indicate whether there have any serious disease, if they haven’t got any serious disease it give us as clinicians a green light to tell them to get going and get moving, and that it’s safe to do that. So that second question of what should I do about it, if people haven’t got any red flag signs, then movement, activity, addressing fears about pain, getting going in a graded manner, building activity up gradually, will usually result in recovery.

Evans: You mentioned acute pain and persistent pain, now just tell me what’s the difference?

Rogers: Acute pain is pain that is usually associated with tissue damage, so in the first instance of a injury, where you break your leg, or you tear a muscle in your calf, the pain is a very useful indicator of tissue damage, it tells us to rest and area. And normally over a period of a few days or weeks, or a short number of months acute pain will subside, so the danger signals calm down as the body heals itself. So acute pain is a good indicator of tissue damage, if we break our leg or tear our calf muscle the pain will tell us that we need to protect an area whilst it heals and as it heals the pain will subside.

When pain becomes persistent it has much less to do with damage to the tissues and more to do with this idea that the nervous system itself becomes sensitised, so the tissues heal but the system that’s responsible to transporting pain messages, or danger messages, from your tissues to your brain become over sensitive. So although tissues healing has occurred, the pain persists because of the transport system. And what happens is danger messages from the painful area continue to persist, and it sets up a cascade of events that means the nervous system remains sensitised.

Evans: So the nervous system is creating the pain signals when the cause of the pain isn’t necessarily there?

Rogers: Correct, the nervous system will send danger messages into our spinal cord and up to our brain and our brain has to interpret whether the incoming information is dangerous or not. If we tell people that their bulging discs or their stiffness in their spine is due to something serious and they need to protect it, then the danger messages keep being interpreted as danger messages in their brain.

It’s our role as clinicians to reassure people that incoming messages from the nervous system aren’t dangerous, reassure them that it’s safe to get moving, explain to them that common findings on MRI scans like disc bulges and disc degeneration are just as common in people without back pain. So that helps to start to reduce the danger messages that people are often given about pain. And our common understanding of the nervous system now tells us that if we can diminish the danger messages that people receive, the threatening messages people receive about pain, which are often unfounded it can calm down the nervous system, calm down the pain experience, and allow people to gain some sort of functional recovery.

Evans: So it’s drugs?

Rogers: The evidence around medication is being questioned currently. We know that medication can be really helpful as a way to get your going and get you moving when pain presents, and when pain persists for a short period of time, but current understanding of the role of medication is being challenged in research currently and the programmes that we have run within our hospital, we have a doctor that works on the programme who helps people to reduce their reliance on medication and learn new skills that they can use in place of the medication. And we have seen significant improvements in patients who have taken less analgesia. So our thinking around the use of medication for persistent back pain is changing, and we try and encourage patients to use a minimum of medication and a maximum amount of self management approaches to promote recovery.

The aim of our back pain approach now is to try and help to prevent chronicity, we’re aware that there are hundreds of thousands of people in the UK currently who have chronic back pain, and the principles that we use can help that group of patients. But there is also a group of patients who are at risk of chronicity and we recognise that some of the psychological factors that I discussed earlier such as fear, confidence, beliefs about pain, if we address those then we can prevent the development of chronicity, and when I say chronicity that means that the back pain becomes overwhelming in terms of not being able to function, it can affect people’s ability to work. Our understanding now is that we do believe that we can help to prevent this by using a combined physical and psychological approach.

So in terms of the psychological issues that are mentioned in the back pain guidelines, applying some simple psychological techniques, and this isn’t deep seated psychiatry, this is just addressing peoples logical beliefs about pain, that we recognise culturally that pain is a sign of damage and we need to protect the area of the body that hurts until we recover. But it’s helping people to understand that that’s useful in the short term, but in the medium to long term we need to tackle persistent back pain differently. So it’s no longer helpful to protect the area, it’s much more helpful to move the area, to stretch it, to get people to do breathing exercises to calm muscle tension down. And that is a way of addressing a psychological fear of movement and is a good way of demonstrating where all the psychology recommendations come from in relation to back pain.

Evans: Ok, I’ve been going through your book ‘back to life’ co-authored with Dr. Grahame Brown, now there are things in here that if I didn’t know this was about backs I would just think this was a book about pain management, there’s some fantastic things. I’ve just been doing in your waiting room visualisation exercises, even things like breathing effectively. Well I breathe because if I didn’t breathe I’d die, so what is there new to say about breathing.

Rogers: So we recognise that when pain persists often, and it goes back to this concept of threat, so we know that if people are given threatening messages about their back it switches on their bodies sympathetic nervous system, that’s your fight and flight response. It helped us greatly with our ancestors when they were trying to escape from wild animals, it prepared us for danger, it increased muscle tension, it dilated our pupils, it got us ready for action. Often when pain persists this system is in overdrive, but we have a counter system, a para-sympathetic nervous system, that can calm muscle tension down, and we activate this system when we do relaxation exercises. So all of that tight muscle tension, the cramping that we feel when we’re in persistent pain, the tightness that we feel, is often due to an over sensitised nervous system, that’s being driven by this fight or flight response. The relaxation response does the opposite of that, we call it our rest and digest response. It can calm muscle tension, it can make us feel much more relaxed, and it can ease tightness and stiffness.

We encourage our patients to activate a breathing method called 7:11 breathing and that can help to calm the system. The idea of 7:11 breathing is that your out-breath is longer than your in-breath. So we encourage people to find a nice relaxed position to begin with, maybe lie on the floor or sit on a comfortable chair, and take a long slow breath in up to the count of seven and then a longer breath out to the count of 11 and to repeat this cycle for five to ten minutes.

Evans: Hang on a minute, I can’t get up to seven so I better slow down my breathing, yeah?

Rogers: And then you breathe out, but your out breath is longer than your in breath. 7:11 is just a label if like, for encouraging people to use breathing control. If you struggle to use 7:11 you could use five and seven. The concept is that your out breath is longer than your in breath and like any skill, you need to practice it to become better at it. But a lot of our patients that use the 7:11 method find that, particular on troublesome days where they are having a flare up in pain, it can be a really quick way to try and calm muscle tension and allow them to get moving. Because often when you have a flare up or a bad day with pain the last thing you want to do is get moving because it hurts so much. So spending five or ten minutes doing some 7:11 breathing can help to calm the nervous system and then allow you to move more freely.

Evans: Well the first thing I notice when I’m doing it, and I’m trying to do it while you’re talking as well, is that my shoulders drop. If I have had tension in my shoulders, things seem to be falling downwards.

Rogers: Exactly, and that’s a very good way of describing how the approach works. We do carry a lot of tension in our shoulders and in our neck, and people often say to us that the 7:11 breathing method can immediately calm that tension down. Just through some simple techniques, people may notice that they, if they’re doing it lying down that they start sinking into the bed. They often find when they’re doing it that if they have racing thoughts, that it helps to calm those racing thoughts and they can think more clearly. Because one of the other problems people have when they have a flare up in pain, is that they often fear the worst, they think the worst, they have racing thoughts such as I’m never going to get over this, how can I ever respond to this, nothing will ever be the same.

Evans: They call that catastrophising don’t they?

Rogers: They do call it catastrophising, and it’s recognised as an important factor in predicting how long a flare up will last. Now I was told a few years ago that there’s this evidence that catastrophising was linked to delayed response when people have a flare up, and I found that rather odd, how can what you think influence how quickly you recover from back pain?

But I soon noticed and recognised in my patients that those that were thinking the worst, that had a catastrophic response, that often ended up in A&E, or were calling the doctor out in the early hours of the morning often took longer to respond to a flare up that people that actually saw it as a normal part of who they were, that had a active action plan to recover, that often thought I’ll get over this, I just need to apply a few principals over the next few hours and I’ll recover. And I started to recognise that this concept of catastrophising was very important in peoples recovery, and again using the 7:11 breathing and encouraging people to reframe their thoughts when they get an episode of back pain, they often find they recover much quicker and get back to life quicker.

Evans: You talk about goals and dreams, now a dream is me wanting to run a 100 metres in half a second. That is not a goal, that’s a dream. So how do you stop my dreams influencing my life?

Rogers: Goals are very helpful because they can be very tangible, we often encourage people to link goals to things that make them tick. At the start of our programmes we encourage people to think about goals that are meaningful to them, not meaningful to others around them. So we ask patients to think about what’s brought you here, what is it that you want to get better in terms of quality of life, to help yourself to recover. It may be that they want to walk round the local park, it may be that they want to go back to playing badminton, it may be that they want to be able to go out dancing again. Those goals are very helpful and they’re very tangible, they’re very achievable.

Dreams are often a little bit more abstract. So a dream might be something that an athlete has, they may dream that they want to win an Olympic gold medal. There are things that they can do that are within their control that are related to goals, i.e. they can train harder, they can get their bodies stronger, they can influence a lot of factors around their own individual performance that will give them the best chance to get that Olympic medal. But there are things that may get in their way that prevent them from gaining that Olympic gold medal. An athlete may be a cyclist who crashes in their Olympic final and they don’t achieve their dream, but they’ve got themselves ready to win that medal, but because of other factors external to them they haven’t been able to achieve their dream.

Evans: They talk about SMART don’t they, what’s that?

Rogers: So SMART is quite a commonly used system for helping people to set goals. SMART stands for Specific, Measurable, Achievable, Rewarding and Time orientated. So a specific goal might be I would like to be able to walk to the top of Mount Snowden. Measurable: you may say you want to be able to do it within three hours. Achievable would be that you can do it, that you have the capacity to do it, that you have the physical ability to do it. Rewarding: you may hate climbing up mountains so it wouldn’t be a useful goal for you, so if you do like climbing up mountains and feel good at the top it would be rewarding. And Time orientated would be to say I’m going to achieve this in three months’ time.

By using that recipe it really helps to pin people down to an activity that is related to their health related quality of life, that they can achieve within a set amount of time and when they’ve achieved it, look back and say I did it. It’s a very effective way of helping people to recover from all sorts of health problems.

Evans: And the achievable bit, I should imagine, is the bit that distinguishes a goal from a dream. A dream is something that you can’t necessarily achieve?

Rogers: Correct, there are other factors within a dream that may make it difficult to achieve, you may still be able to do it, but there are other factors that may prevent you from achieving it. So within back pain, it may be that someone has a particular job that they haven’t been able to do for a while, it may be that that job involves a significant amount of activity that they have lost their conditioning to be able to do. They may be able to do that job alongside some other tasks, but they may not be able to physically get back to doing that job in its entirety.

So sometimes people have to learn that they need to do things differently to achieve their goals, and change how they do activity. Within pain we see lots of people who, they don’t avoid activity, they have a tendency to overdo it they push themselves too hard, and when pain strikes their function becomes significantly worse, and it’s often because they’ve been pushing themselves too hard for too long and their body gives up on them.

Evans: They call that boom and bust.

Rogers: They call that boom and bust, and it can be just as much a problem as people who avoid activity due to back pain. So what we have to encourage those people to do is to recognise their tendency to overdo it all the time, and look at different ways in which they can manage their activity during the day so that they are having a measured approach to activity, rather than overdoing it all the time.

Often when people suffer with recurrent flare-ups in pain it’s because they don’t learn that overdoing it all the time results in another episode of pain. Now when you think about that, what we have to do is encourage people to change their behaviour, and of course behaviour change is a psychological approach. I know I keep going back to psychological approaches, but they have such a wide variety of use within back pain.

I have seen lots and lots of people who have done manual jobs in their career, and when they were younger they could function at a very high level for a long period of time without any problem. When they reach 40 or 50 they often find that it’s much more difficult to work at that pace. They should still be able to do their job, but they may have to do it differently. They may have to kind of think smarter about how they do their job: so instead of getting everything done in the shortest period of time, they may just do things slightly slower, so they’re still productive, but they’re not going into a boom and bust pattern. Often as we get older, the body does become a bit stiffer, activities that we could do as a 21 year old become more difficult, but it doesn’t mean that we have to give up on them we just have to do them differently, learn ways to do them differently. And maybe spend a little bit more time stretching and doing breathing exercises and really planning our day, rather than going gung ho into it and wondering why at three o clock we’re flat on our back unable to do anything.

Evans: And with an ageing working population that’s going to be increasingly important.

Rogers: It is and I think that’s a very interesting question because we do recognise that there are a group of people who have a manual job, they may have never had any significant academic qualifications, all they’ve ever done is manual work and they rely on their body to do their job. When they get to 50 or 55 they’re finding more difficulty. And some people in that group will develop what we call frailty, they become deconditioned, and muscles we know start to become a bit weaker as you get older.

So that group of people, who have always done a manual job, can often be quite challenged by being able to continue working due to the changes in their body and nervous system. So in the future we have to think about how we help those older workers because often they have to retire early, they often struggle to function and have a good quality of life outside of work. And I think it’s a very interesting area of research to look at, as to how do we help those older patients who are still trying to function, but struggling, what strategies can we put in. should be looking at helping older workers to do different types of work to what they would be doing when they were younger, and looking at exercise and relaxation strategies that can help them to continue functioning in the long term.

Evans: But we should be doing that now and not wait?

Rogers: We should be doing that now, and I think that is again another interesting question. Some of the responsibility is the responsibility of each individual, we know that exercise and activity can help to maintain the health of the musculoskeletal system. So encouraging people to adopt healthy behaviours through their life, to eat well, not to drink too much, not to smoke, to look after their weight, to exercise regularly. We know these things can help musculoskeletal health in the long term.

But it’s also the responsibility of employers to look at ways in which people can work differently as they get older, and it’s also the responsibility of society as a whole to try and encourage exercise based approaches and encouraging people to keep physically active as they get older.

Evans: That’s physiotherapist Dave Rogers, and you can read a review of his and Dr. Grahame Brown’s book’ ‘Back to Life’ in the Spring 2017 edition, that’s number 69, of Pain Matters, that’s the sister publication to these Airing Pain programmes. All details are on Pain Concern’s website which is www.painconcern.org.uk. And you can download transcripts and all editions of Airing Pain from there too.

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

Now we’ve concentrated solely on the psychological approach to rehabilitation, but many people with back pain will still push for an MRI scan or X-Ray to diagnose the extent of the problem. David Rogers to finish this edition of Airing Pain.

Rogers: There is a general preconception in society that an X-Ray or an MRI scan will tell us what is wrong with our back. We live in a modern medical world where there are lots of investigations and procedures that can tell us exact diagnosis for all sorts of problems, but unfortunately despite numerous papers, research papers, with back pain MRI scans and X-Rays can’t tell us what’s wrong. Interestingly studies have been done on groups of people who’ve had X-Rays and MRI scans and they’ve compared that group to a group that hasn’t had X-Rays and MRI scans with back pain, and the people that haven’t had X-Rays and MRI scans with back pain have actually had better outcomes. So the evidence is telling us that investigations such as X-Rays and MRI scans in people with common, simple low back pain, where there is no serious pathology, actually make people worse, prevent their recovery more than a group who don’t have investigations.

The explanation that we give to people as to why pain persists is much more to do with explaining how the nervous system changes from the tissues in the periphery, in the region of the back, how the nervous system becomes sensitised, the messages to the brain from that area become sensitised and wind the system up. This is very new information for a lot of people and sometimes difficult to take on board, but if people ask us why pain persists and what’s causing the pain it’s usually down to the nervous system. But it’s quite a new area of practice and it takes a bit of time for people to accept that, compared to a structural cause to pain such as I’ve slipped my disc, I’ve got disc degeneration. We know things like slipped discs and disc degeneration are common in people who don’t have back pain, so that explanation, which was the explanation I used many years ago hasn’t stood up to science. What is standing up to science is this idea that when pain persists it’s the nervous system that’s become sensitised. Relaxation, exercise, understanding your pain, reducing the threat associated with pain are all things that can calm that nervous system down and promote recovery.

Getting this new message across to the general public is a very important aspect of how we can help people to recover from back pain and my opinion is that there aren’t enough people doing it at the moment despite strong evidence that this is the best way to approach back pain.

Contributors:

Dr David Rogers, Orthopaedic Physiotherapy Practitioner at Royal Orthopaedic Hospital, Birmingham and co-author of Back to Life: How to unlock your pathway to recovery.

More information:

Back Care
NHS Choices: back pain
National Ankylosing Spondylitis Society
To order a copy of David’s book, Back to Life, via Amazon click here.

The challenges of pain management in people with dementia, different medications and why an iPod could be latest tool in our first-aid kit

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This programme was funded by grant from W G Edwards and the Cruden Charitable Foundation.

According to a survey carried out by the Alzheimer’s Society, Dementia is the most feared health condition in the UK. Last year alone, 225,000 people developed dementia.

In this episode of Airing Pain, Paul talks to Professor Peter Passmore about the challenges of treating chronic conditions in people who develop dementia, including different medications and why we instinctively link age with pain.

In 2012 Lloyd Hughes authored a report, Managing Chronic Pain in Patients with Dementia. Now a GP trainee, Lloyd discusses how he incorporates his findings into every day patient care and what we can all do as individuals to prepare for a future that may well include dementia.

Andy Lowndes, Deputy Chair of Glasgow based charity Playlist for Life, describes the power of music in helping those living with dementia – whether as a patient, carer or loved one – connect with each other and reconnect with themselves.

Issues covered in this programme include: Alzheimer’s disease, carers, communicating pain, dementia, elderly people, listening to music, neuropathic pain, opioids, Playlist for Life, pregabalin and relaxation.

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

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Andy Lowndes: I’ve seen many times those tumbleweed moments where we’ve seen in care homes and hospitals, families coming to visit, and after they’ve said how are you today darling, nothing comes back. And that becomes a really difficult, painful time for family members who are visitors of that person.

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Paul: Now, according to a 2016 survey carried out by the Alzheimer Society, dementia is the most feared health condition in the UK. And in 2016 alone 225,000 people will have developed dementia. So, what are the implications for someone with a chronic pain condition who also has dementia?

Well, Peter Passmore is professor of Ageing and Geriatric Medicine at Queen’s University Belfast. He’s also consultant in old age for the Belfast Social Care Trust.

Peter Passmore: It’s hard to avoid pain in all conditions. But in dementia, there are difficulties knowing exactly whether people are in pain or not, more so as the disease progresses. That can influence so many things. We normally focus quite a lot activities of daily living in people with cognitive impairments. Pain can worsen that, but it can also affect their mobility, it can affect their sleep and their mood, and it can cause behavioural problems.

The patients sit in a vast variety of locations. Some people are at home – that might be a milder level of dementia, [for example] just after diagnosis [and] they can communicate maybe as well as you and I. [Other] patients may be in hospital – they say that at least sixty percent of people in the nursing home situation have got dementia, so clearly that’s a sector where we’re very interested and where maybe not so much attention may have been paid. The more confused, more behaviourally abnormal kind of people end up in a different kind of nursing home – again, I think it’s very important to be aware of pain there. And increasingly there has been an increase in interest in palliative care; the services for dementia I think have shied away from it before but now they’re taking much more of an interest. Certainly in Belfast, the hospice is very active there.

Paul: It’s hard enough for a person without dementia to make themselves understood about their pain, to describe their pain.

Peter: Mhm.

Paul: But I guess communication is one of the big issues…

Peter: I wouldn’t say it doesn’t happen in early-stage dementia but those people have more of a memory, so I suppose this is something that you might remember from before: if you’ve had something painful before, then the same thing happens, your systems are functioning and you can say “Oh, that pain, [I] can describe that”. I think – yes, as things progress, naturally you’d start to get worried, because people lose their memory for what that painful experience may have been, they can’t describe it, and secondly their language facility is one of the things that go when you get to more advanced stages (certainly with Alzheimer’s disease).

So, you’re absolutely right, for a variety of reasons. I think you’ve got to have a high threshold and a high index of suspicion. Personally I always ask people if they’re in pain, as a routine question, even if they don’t seem to be in pain.

Paul: You ask people if they’re in pain?

Peter: Mhm.

Paul: Is it automatically accepted by people that, if you’re old, pain is a natural progression? [That] age means pain?

Peter: Y’know, there is an attitude out there among old people, and certainly the studies and the literature bear that out: ‘Sure, what do you expect, I’m eighty-five, I’ve done this, that and the other all my life and it’s just wear and tear’. That is a prevalent attitude. And that’s allied with attitudes like people not wanting to take medication or ‘become addicted’ – that can be a problem and you will get a lot of the studies that show that older people, those without dementia, are in pain and quite a large percentage of them don’t take any medication. Immediately you’d look at medical professionals not detecting and treating that. But part of that is in the patients themselves, as in your question, where they’re just not that happy to be on constant pain relief.

Paul: ‘Aches and pains’ [as they say].

Peter: Yeah.

Paul: What do the research papers say about health professionals or carers at nursing homes – how should they communicate with people with pain?

Peter: Our studies certainly show that there’s a couple of barriers there, that there is a difficulty with detection, and people are not sure about what they should be doing to try and detect pain. And then, after that, the issue would be a kind of pro forma or some sort of suggested regimen for managing that pain when you’ve got it. And of course they also have to liaise with the GP. So there are issues around that. Certainly from our studies it looks like the awareness, knowledge, and the training of care staff and care homes [are] very important [in trying to] get over these hurdles. We know well from the studies, they’re several that show what those barriers are.

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Paul: That’s Peter Passmore, professor of Aging and Geriatric Medicine at Queen’s University Belfast.

Lloyd Hughes is a GP trainee working at the Royal Edinburgh Hospital in Geriatric and Stroke Medicine. As a medical student, he worked in nursing homes as a social support officer. He co-authored the report Managing chronic pain in patients with dementia.

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Lloyd Hughes: I think it’s a very interesting area for a whole variety of reasons. You have all these different types of patients: you have patients that have had chronic pain then developed dementia. Then, you also have patients who may have not had problems with dementia who then developed chronic pain. And from my experience, working in the nursing home as a support officer, it seemed to be a very challenging experience for the GP to try and manage these patients.

First of all, most patients, with the exception of those with genetic dementia conditions, are older and have other health problems [like] lung disease [or] kidney disease which means that some of the [range of medication] that you’d think about using in pain is more limited. Secondly, the gold standard of everything they teach you at medical school is about history taking and clinical examination. [But] clearly, in patients with communication or cognitive difficulties, it can be challenging to get an accurate history, and in some forms of dementia it’s difficult to get a clinical examination as well.

Paul: Let’s start with communication. Somebody without dementia might know exactly where they’ve been in the past, what’s happened in the past. [With dementia] you’re starting with a blank sheet.

Lloyd: Exactly.

I think one of the joys of general practice is the fact that we do have access to long medical histories. I think, one thing when speaking to the GPs is that when you’re going to visit a nursing home and you know you’re going to visit certain patients, you have a bit more of a read about the background – that applies to everything, including pain. Trying to get an idea as to why these patients are experiencing pain is more difficult.

Now, that’s why caregivers and nursing staff in nursing homes are very important in the assessments of these patients. The communication [issue] in dementia is not an all-encompassing thing; there’s different stages of dementia. What doctors and nurses and caregivers have to try and do is to use the communication that the patient has to the best of their abilities to support a diagnosis. [But] I think sometimes doctors are bad at hearing a diagnosis of dementia and assuming that [the patients] are not going to be able to give a history, and it’s somewhere kind of in the middle.

Paul: Where do you start? How do you know that a person has a chronic pain condition?

Lloyd: The easy cases are when the patients have a long-term diagnosis on the system which they may have had for a prolonged period of time and might have developed another disorder. The more challenging ones relate to concerned voiced whether by family members or even the patients themselves about a behavioural change or mobility issues; these are called ‘vague presenting complains’, which they don’t necessarily come to you and say ‘I’ve got pain in my hips’ or ‘chronic issue with my knee that’s been going on for three months’. It’s more the fact that the wife may say ‘John’s not been so good on his feet the past six month, he’s not sleeping as well [as before], he’s being a bit more repetitive in some of his behaviours’… So, from our perspective it’s about trying to think what else can explain this. And sometimes it’s a progression of dementia, but often there is something acute that’s precipitated this so that can often be pain or discomfort or those kind of things.

Paul: We are just talking about nursing homes at the moment.

Lloyd: Mhm.

Paul: Firstly, going into a nursing home, it’s a change of environment anyway so people will act differently. When nobody knows how this person will act in the new environment, how would you go about assessing it?

Lloyd: That’s probably the most challenging point: the point of admission. Because patients are moving from home into a new environment, what generally will happen in this patient group is the nursing staff will do an admission and that will be an advanced care plan which will involve a whole state of getting a background on the patient on what they’ve done before. Then the GP will come in and review the patient.

Often it’s very difficult, on meeting the patient for the first time, to say ‘We’ve got a problem here’ or suggest [that there might be] pain, but the key issue is to document what the GP, caregivers, and care nurses have experienced, and what is normal or what the patient’s baseline is. That is really important.

In most GP records for patients in nursing homes, there is a summary – an e-KIS (Key Information Summary) summary, which basically explains what the patient’s current level of health is when they’re well. Then, it’s about comparing that over time. It may be that in three or four weeks things change, or it may indeed be that that is the new baseline, but it’s just about having an appropriate and accurate assessment at the initial presentation and using that at your comparison point to see what happens over time.

***

Paul: Lloyd Hughes.

Paul: If people with dementia are on medication for pain, or anything else for that matter, some of those medications can have side effects such as causing confusion, drowsiness or any number of things, in fact. So how do doctors establish whether those side effects are because of the medication or the dementia? Professor Peter Passmore:

***

Peter: That’s a very good question at a practical level. You see this in practice all the time: You have somebody in pain, and you may be trying to estimate what is the nature of that pain. Is there a neuropathic component to it? How severe is it? I think for pain a lot of the time it is a best guess – well, it’s an informed guess in our case – when we go in with medication: which medication do you pick, and at what level? How do we manage the pain without causing the patient any untoward side effects?

In this population with dementia you’re already in a situation where the brain is compromised, so what happens is: the more pain you have, the more delirium you get. So that’s problem with the pain itself and that affect will the level of confusion that the patient and also the carer will feel as well. The difficulty you have is if you try to go with the likes of amitriptyline, which is very commonly used, certainly in primary care; if there’s a neuropathic component pregabalin is commonly used; and then if the pain is more severe you have to reach for the opioids.

The issue with all three of these is— amitriptyline alone can cause more confusion as an tricyclic antidepressant with its anticholinergic effects. Opioids also have anticholinergic effects, so if you have to use those together there’s a combined effect, on top of the medication people may already be taking, as you said. Pregabalin can also be associated, even in lower doses, in vulnerable old people with more confusion. So, you can see how it’s a two-edged sword: the pain causes more delirium, and then the medication may cause a little bit of delirium and increase confusion there as well.

So it is a balancing act: I think you do look at the person in front of you and you try to make an estimate of their biological age, what weight they are roughly [and so on] – those will all influence the drug handling things.

The kidney function for opioids and for the likes of pregabalin is pretty important, because those drugs are predominantly extreted through the kidneys so if the kidney function is down, as it often is in old people, you will modulate your dose accordingly. It’s a balancing act and I think that’s why people do need to look at the population they’re dealing with and be pretty well informed about the drugs, particularly about renal function and try and get it right.

It’s easy if you can observe the patient; in the hospital where I work that’s pretty straight forward so if someone seems to become more confused for example if you’ve prescribed an opioid that can be titrated back. But it’s not so easy probably in the community, for people at home or in the nursing home sector. So the GP, if they prescribe and it’s appropriate, [might well advise the patient and the carer] that they need to report back if there are any untoward problems and the situation can be then treated.

Paul: Professor Peter Passmore. Lloyd Hughes again:

Lloyd: One of the benefits of being in a nursing home in some regards is 24-hour care. If you’re a GP seeing somebody at home you make an assessment based upon a clinical examination of maybe 10-15 minutes (maybe longer in a home visit). When you’re in a nursing home you’ve got different staffing rotations, you’re seeing patients overnight and in the day and you can get a more comprehensive assessment of what the patient’s behaviour is over time – the same as caregivers when they’re at home.

That’s really important because often, from my own experience of visiting patients at home or in nursing homes, they might actually be fine when you go and assess them, but there is a concerned voice from the nursing staff saying ‘Actually, he’s not sleeping at night, he’s not comfortable in his bed, he keeping trying to go over in his chair, you can’t lie him flat’ – those kind of things. So you get a bit more information about how the patient’s managing across the 24-hour period. I think that’s one of the things I’ve learned a lot about, actually.

Paul: I’m making a sort of assumption – a false assumption – that dementia means old age and care in a nursing home.

Lloyd: Even twenty years ago the diagnosis of dementia was— that was the diagnosis. Whereas now, there are lots of different types of dementia, and the different types often can affect different age groups. So there is a much better understanding of vascular dementia or multi-infarct dementia and actually that is not uncommon [as I saw when I was in Dundee] in patients even in their early sixties.

You’re quite right that because these patients are often physically more healthy when they develop these cognitive problems, there are more challenges because you can manage these patients at home, they may have fewer other medical issues, which means that you can try different medications differently.

Actually, there is some new research now that suggests that patients with vascular dementia may experience more pain than those with Alzheimer’s dementia or dementia with lewy bodies because of the type of damage that happens to the brain. Different dementia syndromes manifest different types of pathological changes. There’s a lot more research now looking at vascular dementia as a dementia which causes more chronic pain or can cause pain-type symptoms or affect patients’ experience of pain if they do have other things going on like knee pain or osteoarthritis.

Paul: So what are the challenges for the people who are cared for at home, rather than in a nursing environment?

Lloyd: There’s often a lot of caregiver stress, there’s often a difficult dynamic between family members. Also, you have patients who manage [well] with mild to moderate dementia in their own homes and you’re thinking about issues of safety, how they are managing at home, can they provide support with CPN-type followup, have they got behavioural issues, are you able to get district nurses to keep a closer eye on them… So a lot of it is a balance of paternalistic medicine where what we want to do is keep everyone safe and well, but at the same time promoting independence. So I think the question of [how to balance the two] is a big challenge.

Peter: The evidence probably shows that the better you know the patient with dementia, the better you’re able to say whether they’re likely to be in pain. Against that, you have some studies showing that actually caregivers are not too good at reading pain. That’s a fairly critical thing, because if the patient can’t quite indicate for themselves, if the carer isn’t spotting the signal…

The implication is that [caregivers] know [the patients] very very well, so suppose they’re seeing all day every day, they can quite often say to the nurse or another medical practitioner ‘They always do that when they’re in pain so I think they’re in pain’. But I think the implication is when people aren’t involved in that constant level, there could be difficulties in recognising what is a feature of pain from a behavioural perspective. So I think we assume that carers always know but I’m just not sure that the evidence bears that out.

***

Paul: Peter Passmore, Professor of Aging and Geriatric Medicine at Queen’s University Belfast.

***

Paul: So, from what we’ve heard I think it’s fair to say that an overriding issue for people managing chronic pain with dementia is one of communication. I’m going to move from what the health professionals can do to open those channels of communication, to what we – the loved one, spouses, family members, those in early stages of dementia and those of us who may or may not develop dementia in the future – can do to keep those channels over for as long as possible.

Andy Lowndes is the deputy chair for the charity Playlist for Life.

***

Andy: Playlist for Life is really a simple tool which is based around identifying the unique playlist of a person’s life in music and helping a person living with dementia and their family to access that playlist. What we found was that by giving a person access again to the soundtrack of their life it’s enabling them to reconnect to themselves through the memories and the emotional connections and all of the stories around that music.

Paul: But the question must be asked: If you are losing your memory, why aren’t you losing your music?

Andy: This is the killer question, y’know? What we found was that many reminiscing triggers are used nowadays. In a previous life I was involved in stuff like football memories and I’ve used visual imagery, photographs, and so on. That seems to stay for a long time but eventually even recognising yourself in an image can disappear. But the one thing that seems to remain is our ability to respond to music. We don’t know exactly why that is, but certainly evidence from even some of the work that we’ve done shows that connection to a piece of familiar music enables an emotional reaction to happen, which means that memories can be retrieved when even other forms of triggers seem to be lost.

Paul: I can see why this is important for a husband and wife or members of family: it opens up communication channels, doesn’t it?

Andy: Yeah.

Paul: On a less personal level, how does this help the clinicians to assess who the person was, who the person is now?

Andy: The golden thread that Playlist for Life is for us is that it helps the clinicians, the staff, and the carers to see the very unique person in front of them.

There’s a lot of rhetoric in policy now around person-centeredness in care. Go and ask people what that means, and some people will find it quite difficult to explain. But when you can tell a person’s unique life stories through music, that helps them to see unique opportunities for different forms of care, different approaches and different communications – different interactions can occur.

You know yourself that if you and I are sitting here talking right now — and you’re listening intently, which is great — but if a piece of your favourite playlist were to come on outside in the room out there, you couldn’t listen to me anymore, your mind would be taken to listen to that music and to the memories related to it.

That great thing about music being a distraction, this is something that clinicians can use as well. So when someone with dementia, later in their journey, is distressed by their experience, interjecting that familiar music which distracts them from whatever they were doing enables the staff then to engage because they can talk together about that music – it makes the carer experience that much better for the person with dementia, but also for the staff. And we’ve had this reported many, many times about almost a culture change in the way that staff look after people.

We’ve had lots of evaluation being done in the hospice movement and in the acute sector and in some care homes, which show us different things are happening: [for example] we’ve seen a decrease in the number of falls that people are having, which shocked us a bit in the beginning, we couldn’t [work out why]. But of course it’s simple: If you’re looking after somebody who’s less stressed, or distressed as we call it now – if you’re looking after somebody who’s less that way, then they’re less likely to get agitated and want to get up and around, and therefore they fall less! Likewise, we’ve seen improvements in people’s continence levels – what?! Again: if you’ve got somebody who’s less distressed, they can then recognise when they need to go to the toilet – they’re less incontinent. They’re not in a panic, they’re able to go to the toilet or ask to be taken. [Also,] We’ve seen improvements in people’s nutritional intake, because again they’re less distressed so they manage to sit and eat a meal.

We use as part of our training what we call a personalised music assessment tool. It was developed at Nottingham University Hospital trust and the Queen’s Medical Centre. They did a study which looked at the impact of personalised music in an acute care setting with people with dementia. What they saw was an improvement in a person’s ability to cooperate in their care, improvements in nutrition, less agitation, better communication. And we saw an improvement either in a person’s ability to report pain or less reporting of pain. We suspect it was because, again, if someone was more relaxed, less distressed, they were able to say ‘I need some painkillers’; perhaps they were experiencing less pain because their joints were more comfortable, more relaxed. We use either the Abbey Pain Scale or pain-AD (pain in Alzheimer’s Disease) to measure that. So we’ve seen improvements in things like that.

Paul: Now I’ve been on your website many times. We don’t have to tell you to come into our house to be our own musical detective. We can put our own Playlist for Life on the website.

Andy: Yeah, yeah. That’s a part of what we started, when we started the charity. We didn’t want to create an empire of lots of music detectives running around with offices in every town and so on. We wanted to enable people; we wanted to give people the tools to do this themselves. So – absolutely, that tool is on our website. Those trigger questions are on our website. And what we should all do is not wait until we get dementia in our lives; we should go and do a playlist now.

I love music too, obviously I do, this is what one of the reasons why I love doing this.

I have visited many families and many people living with dementia in their own homes and I can remember going to one lady’s house in Edinburgh who quite clearly had a playlist of her life in her house: underneath her windows there was a huge rack of LPs, boxes of tapes and cassettes and so on, sitting there. But she couldn’t work the machines anymore; she couldn’t listen to music that she’s listened to all her life – how sad is that?! How sad is it that she couldn’t sit in her house, put on a record and close her eyes and be taken on the journey that that music was part of. And that’s all that we’re trying to do! It has many benefits for clinicians and for families, yes, absolutely. But it’s simple, we can all do it.

***

Paul: And I’ve done it. So could you! The Playlist for Life website is playlistforlife.org.uk. There you’ll find all the information and tools to make your own playlist for life.

And now, another trusted source of information is the Alzheimer Society, and they can be found at alzheimers.org.uk.

I mentioned at the beginning of this edition of Airing Pain that according to their research, dementia is the most feared health condition in the UK. So does this explain why over half of people in their survey actually put off seeking a diagnosis for up to a year or even more? Well, I’ve just had my sixtieth birthday. I don’t have dementia, but I do have a chronic pain condition. I’ve made my playlist for life – but what else could I do now, to make sure that my pain issues are managed if I do go on to have dementia?

***

Lloyd: That is a very important question. I think for a whole host of physical and mental health concerns about developing dementia, I would advise advanced care planning. This term is often bandied around, but all it means is providing a health professional with a good background about what you experience, the challenges that you have, and how that changes over time.

So in the example of pain, you may wish to explain to your care provider about what type of pain you experience, how frequently you get that, what activities bring that on, and how that affects you (that may be with sleep, or in terms of the activities you can perform, those kinds of things). That information is really important, because if you do develop cognitive deficits as you get older, that allows health professionals to get aspect of the history and assess you at that place in time but it gives them an excellent source of reference to say ‘Actually, this is what this patient has experienced over the last forty years so it’s reasonably unlikely that that would have changed a huge amount, so let’s use that as a guide’ and ‘How can we use that to try and improve our management?’

I think that’s particularly important as patients get older, because if you’ve had chronic pain and you’re sixty years old, you may be on medications which may well be inappropriate when you’re 85. That’s not necessarily that they’re inappropriate because of the type of pain, but because the kidney function may decline, your liver may not work as well, and therefore the medications that work at 60 may not work and may actually cause a lot of side-effects at 85. Often the same medication is appropriate, but it just required dose adjustments.

So this resource — explaining what you’re experiencing how you’re experiencing it and what types of activities bring on these things — is very important. And that refers to chronic pain but other medical things as well, so I think [you should plan] ahead and [be] open with your care provider. Also, if you are involving other agencies, [such as] if you go into a dementia assessment centre, these are all things that are really important to voice to them, because there’s often a brilliant letter written by Psychiatry or Geriatric units which provide that information from your GPs who may see you over the next ten or fifteen years.

***

Paul: Lloyd Hughes, co-author of Managing Chronic Pain in Patients with Dementia.

***

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

***

So, to finish this edition of Airing Pain, what advice would Lloyd Hughes give to someone whose family member or loved on is starting out on his or her dementia journey?

***

Lloyd: Try and do what you can. From my experience in working with hundreds of caregivers, I think people sometimes are really hard on themselves, they’re overly concerned about what people will think about their decision. I think what people need to do is think about what they can do physically to support their loved one. That may be practical things, may be taking them to clinical appointments, may be arranging support at home, and so on. But also what they can manage themselves. I think managing your own health, both mental and physical, is really important, because if you do that you’ll actually be able to support your loved one more effectively.

The other thing I’d say is don’t suffer in silence. Dementia is this devastating diagnosis, it’s a journey which is often quite long, challenging emotionally and physically. There are going to be periods of time in the vast majority of caregivers’ lives where they’re very worried, they’re particularly down or anxious about things, worried about the future… And I’d say to those people, speak to people! That doesn’t necessarily mean ‘speak to your GP’ – I’d love seeing patients talk about these things – but just being open with friends and family about your concerns, how you’re managing. Because talking about these things is really important, and there’s actually now a lot more support out there than there was twenty years ago: there’s charitable organisations, there’s befriender groups, there’s dementia day centres… There’s a lot more out there. And I think talking about these things may allow you to find solutions that may help you and help your loved one.

Contributors:

Professor Peter Passmore, Professor of ageing and geriatric medicine at Queen’s University Belfast
Dr Lloyd Hughes, GP trainee specialising in geriatric and stroke medicine at the Royal Infirmary Edinburgh
Andy Lowndes, Deputy Chair of Playlist for Life.

More information:

Playlist for Life
Alzheimer’s Society
NHS dementia guide
Dementia UK
Dementia Carer
To read Lloyd Hughes’ report Managing Chronic Pain in Patients with Dementia click here
To upload your own playlist to Playlist For Life click here
For more programmes on pain management and caring for the elderly, visit our Pain and the elderly playlist.

The challenges of pain management in people with dementia, different medications and why an iPod could be latest tool in our first aid kit

This programme was funded by grant from W G Edwards and the Cruden Charitable Foundation.

According to a survey carried out by the Alzheimers Society, Dementia is the most feared health condition in the UK. Last year alone, 225,000 people developed dementia.

In this episode of Airing Pain, Paul talks to Professor Peter Passmore about the challenges of treating chronic conditions in people who develop dementia, including different medications and why we instinctively link age with pain.

In 2012 Lloyd Hughes authored a report, Managing Chronic Pain in Patients with Dementia. Now a GP trainee, Lloyd discusses how he incorporates his findings into every day patient care and what we can all do as individuals to prepare for a future that may well include dementia.

Andy Lowndes, Deputy Chair of Glasgow based charity Playlist for Life, describes the power of music in helping those living with dementia – whether as a patient, carer or loved one – connect with each other and reconnect with themselves.

Contributors:

Professor Peter Passmore, Professor of ageing and geriatric medicine at Queen’s University Belfast
Dr Lloyd Hughes, GP trainee specialising in geriatric and stroke medicine at the Royal Infirmary Edinburgh
Andy Lowndes, Deputy Chair of Playlist for Life.

More information:

Playlist for Life
Alzheimer’s Society
NHS dementia guide
Dementia UK
Dementia Carer
To read Lloyd Hughes’ report Managing Chronic Pain in Patients with Dementia click here
To upload your own playlist to Playlist For Life click here
For more programmes on pain management and caring for the elderly, visit our Pain and the elderly playlist.

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

To listen to the programme, please click here.

Prefer a PDF?Download

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

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

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

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

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

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

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

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

Paul Evans: Interstitial Cystitis or Painful Bladder Syndrome is a poorly understood bladder condition that causes long-term pelvic pain and problems with urination. The charity, Bladder Health UK, estimates that 400,000 people in UK live with the condition – roughly 90% are women and 10% are men. Anne Cameron is a coordinator for Bladder Health UK in Scotland.

Anne Cameron: It’s an abnormality probably in the bladder lining. At the moment, the cause of it isn’t known it could be autoimmune or allergy related, in some people it tends to come along with other disorders like Fibromyalgia, bowel disorders, migraines. Some people may have obvious abnormalities in their bladder under cystoscopy; other people, it’s no so obvious. But it generally causes or can cause pelvic pain, which can be really quite significant, urinary frequency, difficulty voiding urine, emptying your bladder fully or going for long periods, and quite a lot of other pain issues with, say, pain in your legs, various different areas in your pelvis. It does tend to vary quite a lot, but at the moment the cause isn’t known, and there’s no treatment that cures it and there’s no treatment that helps everyone.

Paul Evans: Now, you were a nurse?

Anne Cameron: Yes.

Paul Evans: Did you have this?

Anne Cameron: I had it when I was nursing latterly, yes, and it gradually worsened to the extent that I found work extremely difficult, persisted in working, despite the advice of my consultant, was told that I shouldn’t have been working, and then I eventually went on to have surgery which restricts me to what kind of job I can do. And I couldn’t go back to nursing because my job was too heavy, so I’m now medically retired.

Paul Evans: Anne Cameron, coordinator for Bladder Health UK in Scotland. Jennifer Hayes has had interstitial cystitis for 2 years.

Jennifer Hayes: Well mine actually started with a bout of traditional, bacterial cystitis, and I’ve had that on and off all my life since I was 17. And it’s always cleared up by antibiotics. And then just less than 2 years ago the antibiotics didn’t seem to clear it up, and I repeatedly went back to the doctor and said ‘It’s not gone away’ and they would do their tests and they would say ‘But it has gone away’. Then we kind of got into a loop, and I was eventually referred to see a specialist but that took 9 months and by then it started to improve a bit. Of course, since then it’s recurred so it’s just a viscous loop really.

Paul Evans: I suppose, bladder problems, it’s not something that you shout about or that you really want to make known to people?

Anne Cameron: No it’s not, but I found latterly, when I was particularly trying to work, that I had to – I didn’t have any option. Although you could say to your workmates ‘I’m not feeling very well, I’ve got a headache’ because of where I worked – I was in a ward – and there were no toilet facilities in the ward, and it started to become obvious to some staff. And at times you do have to tell people because when your diet get restrictive, when your fluid intake starts to get restrictive at times, or you’re toilet mapping all the time, you kind of find maybe a lot of people that you’ve been in contact with a lot of the time, family, friends, all that, becomes very difficult.

Paul Evans: Anne mentioned the term ‘toilet mapping’- what does she mean, Jen?

Jennifer Hayes: It’s sort of keeping a record of how often you go to the toilet, how much, you might measure what you’ve voided, because sometimes the bladder doesn’t empty properly so you have to keep a record of how much fluid is going in, how much fluid is going out, how often, how you feel, what pains are involved in that.

Anne Cameron: I had quite a lot of intravesical treatments and at that point you have to chart-

Paul Evans: Inter- what treatments?

Anne Cameron: Basically treatments passed by catheter into your bladder to try and coat your bladder. And at that point they need to know how often you’re going to the toilet, what problems you’re having, what pain you’re having. But the toilet mapping is also this thing in the back of your head if you’re going out you need to know where all the toilets are in case you have to rush. And you can get to the point where you can be quite obsessed about it at times. Travel’s very difficult: being on a motorway is an absolute nightmare, if there’s a lot of traffic and you can’t get off to toilet that you know is a mile up the road.

Paul Evans: What sort of issues do people who come to your support group bring with them?

Anne Cameron: The younger ones a lot of the time it’s managing work, managing a kind of normal life. I’d obviously been married for a long while and I’m quite lucky my husband’s quite easy-osy, but it does put an awful lot of strain on your relationship at times. I certainly felt an awful lot of guilt and I know that there’s maybe younger members in the group that perhaps would like to have families and all this kind of puts that up in the air. So that must be even more difficult for younger people y’ know, relationships and things like that.

Paul Evans: Explain why it puts it up in the air.

Anne Cameron: If you were to decide to go ahead and have a family, you don’t know how that’s going to affect the interstitial cystitis, if it’s going to make things worse. But it’s very disruptive to your life: I worked night shift for years but I quite often couldn’t sleep when I came home during the day – it was quite common for me maybe to only get a few hours’ sleep one night a week, type thing – which is very disruptive if you’ve got somebody, a partner, a family at home who are going out to work the next day. You know that you’ve kept them awake because you’ve been back and forward to the toilet all night. Certainly in my case, and I think it must be quite common a lot of the time, I use a separate bedroom to avoid disturbing my husband. I think quite often feel that they find that a bit hurtful.

Paul Evans: So what do you tell the young girls who come along to the support group with interstitial cystitis who are thinking about starting a relationship?

Anne Cameron: We only really have one younger member in the Glasgow group at the moment. There’s another couple of members who are already in relationships and I think quite a lot of them have read up quite a bit beforehand.

Obviously things have been discussed, not so much about preventing pain in the first place, and not purely through relationships, but perhaps things that other members have found would ease their pain. Everything isn’t the same for everyone. Some things suit some people and wouldn’t be at all helpful to others. A lot of it’s a very personal type thing, and a lot of its kind of a trial and error to see if there’s anything that you would possibly find helps you.

We had a talk from Pain Concern and pacing was mentioned; that’s something I’ve tried to do for quite a long period of time, and sometimes that’s something that I feel you have to try and fit into a relationship as well.

Paul Evans: Explain that.

Anne Cameron: Well, obviously I’ve been married for years I’m not in a new relationship or anything like that, but if I thought I was going to be intimate I wouldn’t the 2 or 3 days before do anything that was too active that I think would perhaps exacerbate things. I would have watched when I was working, I would have monitored how tired I was or how I was feeling at the time, and I certainly wouldn’t have planned to have gone and done anything very adventurous the next day.

It’s not just with intimate things; if I’d wanted to do, say, anything outside or a hobby that I liked, you tend to find that you have to work out what you want to do and then rearrange things either side of it to enable you to do that. [to Jen] You’ve probably found that at times?

Jennifer Hayes: Yes, you want to do some planning but your plans can often very easily go awry. But you do need to sort of protect yourself and slow down.

Paul Evans: Pacing is very difficult isn’t it?

Jennifer Hayes: Very! And it’s almost like needing a crystal ball as well. And when you feel that you can do something the temptation is of course to just go ahead and do it.

Paul Evans: But you say sort of ‘Plan 2 days ahead’, or ‘Maybe you could plan 2 days ahead’ if you want to be intimate with your partner – that is very difficult for a young relationship.

Anne Cameron: Yes, I think it is. And I think that’s why so many people probably end up feeling very guilty and being hard on themselves, much harder than they really should be. But there’s always this feeling that you’re letting someone down. I would imagine particularly in an early relationship with younger people it must be very difficult.

Paul Evans: What are the treatments? If there are treatments.

Anne Cameron: There are various recognised treatments: none of them are cures, they don’t all work for everyone, [in] some people they may worsen their pain. Quite often initially, if you have a cystoscopy to attempt to diagnose interstitial cystitis you may also have a hydrodistention, which basically stretches your bladder with fluid under pressure. It’s not 100% sure why that works or how that works, but it’s probably to do with damaging nerve endings so you’re not feeling so much pain. That’s certainly a treatment I had and I wasn’t perhaps very keen on the idea, and the logic behind it didn’t seem quite right to me, but unfortunately sometimes you don’t really feel like you’ve got any option.

There’s also a various range of bladder installations which I have. They’re usually weekly treatments that run for 6 weeks and may be repeated every few weeks depending on your response to them. Most of them are based on hyaluronic acid, which didn’t concern me, but the sort of older treatment is DMSO and it’s based on a bi-product from the wood industry – like, paper and wood – and it’s a glue-type substance, which I wasn’t keen on, but that’s one of the main treatments.

There’s only really one oral drug which is prescribed for this, but that’s on a named patient only basis and your consultant has to prescribe that for you. That can be quite difficult to get depending on your consultant and which [NHS] trust you’re in. You usually have to take that for about 6 months before you start to notice any difference.

In America I think for several years they’ve been doing what they call rescue remedies, which has bicarbonate of soda and various things, an installation that they put into the bladder. As far as I’m aware that wasn’t available in Britain until quite recently, I don’t know how widely it’s being used in Scotland, although I know there are some areas in England where I know it’s being used. But that’s to relieve the pain immediately rather than a long term type thing.

There’s dietary advice, some people may take antihistamines, there’s probably quite a lot of people who unfortunately don’t get the chance maybe to go to a pain clinic and are on morphine and things like that. I don’t know that that generally always helps people, certainly in my case I take gabapentin and amitriptyline. It kind of tends to vary perhaps which consultant you see, some of them obviously have different ideas and there is a wide range of particularly antihistamines, I think, that people try. There’s obviously quite a lot of herbal things and there’s quite a lot of supplements which are suggested, but I think sometimes you’ve got to be careful because you could end up with this list of things as long as your arm and you don’t really necessarily know what’s helping you and what isn’t.

Paul Evans: Anne, you were saying you had a procedure – an operation – to help you out?

Anne Cameron: Yes, I had what’s called a continent urinary diversion with Mitrofanoff. Basically my bladder had been so badly damaged and had such small capacity I was more or less living in the toilet and there was no other treatments available to me. This was my last option. So I ended up having surgery, I was in hospital for about 4 weeks. I had my bladder, not removed I had it disconnected because of issues with blood vessels, and I now have a section of bowel which is internal and which is now a reservoir for urine. I have a very small stoma, which I catheterise about every 3 hours, and unless I have problems in the future I’m hoping this will be a life-long thing. Although I may in the future have to resort to a urostomy and wear an external bag.

It has benefitted me hugely in some ways, but in other ways can be quite difficult because it’s not a commonly done procedure. My GP doesn’t really have any awareness about it and that can make things quite difficult if I have any problems. Once I eventually had my first cystoscopy about 4 years after I started going to my GP I got a definite diagnosis at that point. Up to that point, I’d basically been told ‘Oh you’ve got IBS, get on with it. It’s in your head.’

Paul Evans: Anne Cameron of Bladder Health UK. And I think this is a good point in the programme to remind you that that whilst we in Pain Concern believe the information and opinions on Airing Pain are accurate and sound based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances, and therefore the appropriate action to take on your behalf.

Now back to Anne Cameron was saying about being made to feel that the pain was all in her head. It’s a recurring theme with the people I speak to who live with chronic pain conditions. However, it’s not to say that that the power of the mind isn’t a fantastic resource to help manage one’s pain.

The acronym EXPPECT stands for Excellence in Pelvic Pain and Endometriosis Care and Treatment. The EXPPECT Pelvic Pain Service is based in Edinburgh’s Royal Infirmary and it consists of a multidisciplinary team, including; a consultant gynaecologist, a consultant in anaesthesia and pain medicine, a specialist nurse, an acupuncture therapist, a psychiatrist and clinical psychologist Dr. Shona Brown, who leads the pain management programme there.

Shona Brown: There’s still a lot of misconceptions about psychology’s role particularly in pain management and I think I always start consultations off with women by saying it’s not because we think the pain isn’t real, or in their head. But we know that living with pain as a long term condition can be incredibly stressful, can impact what people can do, and that can have a knock on effect to their mood. And it’s all about trying to help people live well with long term conditions.

Paul Evans: And one of those people who’s been living with her long term condition, that’s pelvic pain for 5 or 6 years, is Pat Brown.

Pat Brown: I’m in pain, it’s chronic, it’s neuropathic, and I think it started because I had lichen sclerosus. And once I was treated with steroids for that I seemed to have a reaction to it, and was left with this pain that I just had to try to deal with. And wasn’t dealing with at all. The symptoms were as if every step I took, someone was stabbing me with a knife up my vagina. There’s no other way I can explain it. And then the pain radiated out from there, and I couldn’t sit at all.

It seems quite simple to say ‘I couldn’t sit down’ but that affects everything in your life – you can’t go out and socialise. Y’know I always joked to say I could lie down with my legs up in the air all day but other than that, I couldn’t do anything! And then as the medication increased, and I’m not sure if it was the medication or myself, I began to get more panic attacks and have night terrors, and culdn’t sleep either. So I was in a state both physically and mentally that I thought – and I know it sounds dramatic – but I thought I just could not continue, like that. And I was so lucky that my GP referred me to Shona, and I attended Shona’s class for 12 weeks, so it was 6 sessions.

The crazy thing is I think I was in so much pain and so panicked about it, I couldn’t see a way out of it. And I now wonder why I didn’t look at other things I could’ve done. But at the time, I wasn’t able to.

Paul Evans: Is that a common story?

Shona Brown: Yeah, and I think the nature of pain, it’s so completely life altering and I think people feel really stuck. I think our society is very geared up to the medical model, y’know: we have a symptom, we expect to go to a doctor, for them to give us a diagnosis, a treatment, and that we will then be cured. And, I mean medicine is amazing and for lots of things it works very well, but we do know there’s some times that it just doesn’t work that way, and I think lots of the women that I see feel very stuck and very hopeless and not sure where to turn now. They feel quite on a path of trying to see a different doctor, get another opinion, another medicine, and I think sometimes it can feel a bit of a relief to know that there’s something else that can help, another type of approach, and to look at some non-medication strategies.

Paul Evans: So at what point were you introduced to the idea of seeing a psychologist, Pat?

Pat Brown: I didn’t even know I was going to see a psychologist, because my GP said she would refer me to pain management at the hospital, and I did say at the time ‘Please refer me to someone that will actually help’ and so I was referred to Shona’s clinic. When I got there and I had 2 one-to-one sessions with Shona, first of all I just cried more or less all the way through it.

Initially I wasn’t sure of where this would take me, but actually I was really pleased to speak to someone. And I think with neuropathic pelvic pain it’s very isolating, too. You can’t actually go to someone and say ‘Well, y’know, my bum’s really sore’ or ‘I can’t sit down’, you can’t – well I never felt I could. I live alone, so I could speak to my son and 1 or 2 people, but generally, even now, maybe 5 or 6 people know I have this condition. I think it’s an embarrassing condition for a woman and woman maybe of my age, but I was very isolated as well. So I was happy to speak to Shona, not really having any expectations. And she did mention the first time, or maybe the second time, we met, would I think about trying mindfulness. And I said to her I was be too old and cynical and I wouldn’t be doing that, y’know, I wasn’t really sure of what I was entering into.

Paul Evans: It’s a huge leap, isn’t Shona: you go to the doctor to be fixed. The doctor fixes, you are fixed. So it’s a huge leap to come to someone like you.

Shona Brown: What always amazes me is the bravery of people coming along, and I’m asking really personal, intimate questions, and how open people are. And how open minded they are. And I think maybe it is a reflection of people feeling they haven’t got anywhere else to go and they’re willing to give it a try, but you know, I think that’s great from my point of view as a pain psychologist that people come with an open mind, willing to try things out. I think that’s sometimes part of the work we do as pain psychologists, is trying to help people start to come to terms with the process of adjusting to the fact that this might be persistent, and maybe a cure a cure isn’t going to be coming along any time soon.

Pat Brown: The first session that Shona did was actually about understanding your pain and looking at the actual, physical, what pain is. And I suppose, in a crazy way, I had never thought of that. I think I was in the model of going to the doctor and getting it fixed. So I think you build up confidence in the group, and then to be quite honest I was very, very desperate and I would’ve tried anything. If I could have stood on my head for half an hour every day and that would have got rid of my pain I tell you, I would have managed it. So I was willing to try everything that Shona recommended. I didn’t do all of them, but I certainly looked at them, tried them out and thought ‘does that fit for me?’ and through that managed to develop some strategies that help my pain.

Paul Evans: What sort of strategies?

Pat Brown: Well, the first thing Shona gave me, because I was so desperate when I saw her in the one-to-one sessions, she gave me a CD of tracks of relaxation. At first I listened to all of them, and then there was one which was a very straightforward one of tensing and relaxing – nothing, y’know nothing [complicated] – but I decided that I would do that every night before I went to sleep. I’d go to bed and I would listen to the track with my earphones on. And I did that, and I have to say, before I even started the pain management course, the night terrors went. I still didn’t always sleep well, but maybe it was also the fact that I felt I was doing something, you know, whatever it is it was something I was doing. I remember saying to Shona in class when we were in the group, I was going to do this every night whether I felt great or bad, no matter what, and it would be my sort of security blanket. And I’m still doing it 2 years later, every night. Wouldn’t matter if I went to bed at 3 in the morning, I couldn’t go to sleep before I did this relaxation tape. So that was one strategy I’ve kept.

Other strategies are doing mindfulness every day, and exercise. Which, you know, I’m not very keen on exercise – I wouldn’t say I was an active child or adult – but now I do exercise, especially yoga. So that’s another one. And actually just trying to have a much more positive mindset when it flares up at its worst, to think ‘I’ve been here before and it has got better, and if I can really really distract myself then I will have even 5 minutes without pain, which could end up being an hour’. The first time I did a yoga class, I didn’t have pain the whole of the rest of the day. Sometimes now I do yoga and I’ve not got pain for an hour. But I never come away from a yoga class in pain.

Paul Evans: The pain management programme you said it’s a 12 week programme. What happens when that 12 weeks is over? When you’re on your own?

Shona Brown: That’s something we talk about as part of the group, and we start to prepare people to think about what are the next steps, because I’m well aware that doing a short term group it’s not that at the end of that group everything is exactly how the person would like it to be. It’s introducing them to some coping strategies and the start of a process. So then thinking about what the next steps are, and what there is, perhaps third sector organisations that might support that. I always mention Pain Concern and Airing Pain to give people some of the things that are out there that they might want to link in with. Things like vulval pain we’ll mention the Vulval Pain Society website, get people thinking about what other sources of support there are.

And yeah and acknowledging that it can be a bit of a scary time. I think if people have made progress they sort of attribute that to coming along to the group, and I often think about it quite differently. I think actually it’s what the people who are coming along are doing, it’s them who are making these changes – we’re just giving them some ideas. So discussing some of that I think can be helpful too.

Paul Evans: That was psychologist Dr. Shona Brown of the Pelvic Pain Service in Edinburgh. And some of those third sector organisations: of course we at Pain Concern can be found at www.painconcern.org.uk she also mentioned the Vulval Pain Society and its web address is http://www.vulvalpainsociety.org and the patient support charity, Bladder Health UK http://bladderhealthuk.org/

Here’s their coordinator in Scotland, Anne Cameron’s advice for those who think they may have interstitial cystitis, but aren’t sure. What’s the first step?

Anne Cameron: I think I would look at their symptoms, advise them to think how long this has been going on for, the problems that they’re actually having. Obviously going to their GP. If they’re looking online, obviously look to sites like Bladder Health UK. Be careful at times looking online because it’s like everything else you can get a lot of bad advice, and sometimes it’s very easy to read things and think ‘Oh I might try that or I might do this’: everyone’s entitled to different views but look for information via a reputable source.

If they feel this is possibly what they’ve got, perhaps do a wee bit of research and if you decide to go to your GP explain your symptoms and explain to them why you think you have this. But to be honest, [being] realistic about it, you might find you have to push quite a bit or it’s something that you have to persist with.

Paul Evans: So you have to be positive with your GP?

Anne Cameron: Yes I think so. Sometimes it’s difficult to be, but I think if you perhaps go in negatively with a big list of symptoms and you’re really stressed about it in front of them, I don’t always think that benefits you best. In all fairness probably at times I was a bit like that because I found it took so long to get a diagnosis. But contact Bladder Health UK, phone them up: they’ve got loads of resources whether it be books or whether it be advice leaflets. You’ve also got the capacity to ask questions, they’ve got a medical panel of urologists and things can be ran passed them. There are quite a lot of options but just be careful where you look for the advice.

Paul Evans: And you were saying about seeing your GP. Pain Concern publish a document about managing your consultations as well, and I think one of the words of advice is that you should go in with a short list: not a list of 24 things that you think might be wrong with you.

Anne Cameron: Yes.

Paul Evans: And just tell me again, support groups: how important are they, Jen, for somebody starting out?

Jennifer Hayes: I think they’re tremendously important, because very few people mention the word ‘interstitial cystitis’ actually, my doctor has never called it that.

Paul Evans: What does he or she call it?

Jennifer Hayes: Irritable bladder syndrome. But when I went to see the specialist at the hospital, all the support staff said ‘It’s probably interstitial cystitis, have you ever heard of that?’ But I had heard already heard of it, because when you start looking up bladder conditions it leads you, and then you lead and you look at that and you think ‘Oh that’s it, that’s just exactly what it is’.

Paul Evans: That was Jennifer Hayes. Now, we referred earlier to endometriosis. If this is something that affects you, then listen to Airing Pain edition number 42, which focuses on endometriosis.

You can download that and all editions and transcripts of Airing Pain from Pain Concern’s website, and once again it’s www.painconcern.org.uk.

Now, to end this edition of Airing Pain, you’ll remember that Anne Cameron mentioned that her GP had thought her pain was all in her head.

Anne Cameron: When I went back and just happened to see the same GP again after my surgery I think he was a bit taken aback. He obviously realised you don’t end up going through major surgery and being in hospital for a month for something that’s in your head.

Paul Evans: The plus point there, I guess, to fill one’s glass half-full, is that now your GP knows what the condition is.

Anne Cameron: Well I hope so, and I hope it’s something that would be to the advantage of other people going in with the same kind of symptoms. I hope they would pick up on it now, rather than people being in this situation where it goes on for years and you’re unable to get any help. I hope what I’ve gone through would perhaps be of benefit to someone else.

Contributors:

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

More information:

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

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

Contributors:

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

More information:

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

To listen to the programme, please click here.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Paul Evans: So how do you address that?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Paul Evans: Rebekah Shallcross. Winston de Mello again.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Contributors:

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

More information:

vulvalpainsociety.org/vps/.

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

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

Contributors:

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

More information:

vulvalpainsociety.org/vps/.

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