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Today the Faculty of Pain Medicine releases their Four Nation Strategy for Pain Management.


Pain Concern fully endorses this strategy and we encourage you to learn more about it, and how it could shape the way care is delivered for people with pain, at 👉 https://fpm.ac.uk/four-nation-strategy-pain-management

Vidyamala Burch, who has dedicated 21 years to helping people manage their pain and illness through Breathworks is recognised for her services to the country.

(Manchester, 2022.06.02) Today, Vidyamala Burch has been made an Officer of the Order of the British Empire (OBE) in the Queen’s Birthday 2022 Honours List. She has been honoured for her Services to Wellbeing and Pain Management as the Co-founder of Breathworks, an organisation which teaches mindfulness-based approaches to people coping with pain, illness and stress.

Vidyamala’s work over the past 21 years has contributed to changing perceptions of pain, illness and disability in the UK. Her Mindfulness-based Pain & Illness Management (MBPM) Programme was the first of its kind to introduce a new way of managing a health condition through a comprehensive approach of mindful awareness and compassion practices, pacing, meditation and mindful movement. Today, Vidyamala’s evidence-based Programme has reached over 100,000 people globally and is used by the NHS and health boards to enrich psychological methods for treating chronic pain. 

Vidyamala’s influence through the years has been recognised by The British Pain Society for her outstanding contribution to the alleviation of pain, and the Shaw Trust Power List for her role as a change-maker for future generations living with a disability (in which she has been named for four years running). She is the award-winning author of Mindfulness for Health (first prize, Popular Medicine in British Medical Association Books Awards), Living Well with Pain and Illness and Mindfulness for Women. 

Vidyamala’s work is born from her own personal experience of living with health challenges for 46 years. After sustaining spinal injuries in her teens that left her with partial paraplegia and severe chronic pain, she began to explore meditation as a way to manage her condition and found the results to be life changing.

In 2001 she started teaching her methods to others and in 2004, she Co-founded Breathworks in Manchester. Breathworks is an organisation whose mission has been to ease suffering and make mindfulness accessible to those living with pain, illness and stress. Operating as a charity, Breathworks trains teachers to embed its approach into a range of community settings, from pain management units to prisons, and from schools to hospices.  It provides funding for community projects and bursaries and scholarships to those with financial barriers.

Vidyamala says: 

“I am over the moon to receive this OBE, in The Queen’s Platinum Jubilee year no less. Over recent decades, it has been reassuring to see attitudes and clinical research support the power of psychological interventions in managing chronic health conditions. In our day and age, I see this work as more important than ever. Through my work, I hope to continue to pass on the tools that have helped me to reclaim a full, happy and meaningful life.”

In 2021, Vidyamala partnered with University College London and the NHS to contribute to an app to support those recovering from long COVID. This work has now informed a Mindfulness for Managing Long COVID Course which was launched free to the public this year by Breathworks. 

Vidyamala lives in Ledbury, Herefordshire where she continues to teach, deliver keynotes and coaching online and in person. 

Our new issue, Pain Matters 80, is released today, Friday 13th May 2022.

How we think about pain and how we research it.

Inside Issue 80: Funding for pain research is absolutely essential in order to move towards a healthcare system with improved outcomes, where quality of patient care is better informed by science and led by the needs of the patients. With that in mind, we are pleased to announce that this edition of Pain Matters is guest-edited by Lesley Colvin, co-lead of the University of Dundee Chronic Pain Research Group along with David Walsh, the Director of the Advanced Pain Discovery Platform (APDP).

 

Read about how Adverse Childhood Experiences (ACEs) can affect how we experience pain throughout our lives, hear about lived experiences of pain from patient research partners and find out about which treatments really work!

 

View Pain Matters subscription options.

Buy or subscribe at painconcern.org.uk/product-category/pain-matters/.

Or why not try our digital version, available at pocketmags.com/pain-matters-magazine.

Earlier this week the BBC released their findings after conducting an exclusive survey on adults with chronic pain. The BBC launched an investigation which revealed staggering numbers of people living with chronic pain. Watch A Life of Pain on BBC iPlayer now or read the BBC’s findings in their article “Chronic pain: The ‘unbearable’ condition affecting one in four”.

How do you identify illness in young children and coping as a family.

This Airing Pain was recorded at the Scottish Network for Arthritis in Children SNAC’s 2022 Family Weekend at Crieff Hydro, which brings together families recently affected by juvenile idiopathic arthritis and some of the country’s leading paediatric rheumatology experts. 

To listen to the programme please click here.


Issues covered in this programme include:

juvenile idiopathic arthritis, autoimmune disease, coping as a family, rheumatology, paediatrics, support networksidentifying illness in young childrenmovement and exercise, steroids.


Contributors:

  • Parents (and their children) of 23 children between the ages of 5 and 14 who have juvenile idiopathic arthritis.
  • Sharon Douglas — SNAC (Scottish Network for Arthritis in Children) chairperson & co-founder.
  • Julie Duncan – General Paediatrician NHS Lothian District General Rheumatology Clinic.
  • Vanessa Raimondo — Rheumatology Nurse based in Edinburgh.
  • Alison Ross – Children’s Arthritis Nurse working in Aberdeen.
  • Jo Walsh – Paediatric Rheumatologist based in Glasgow, working as part of SPARN (Scottish Paediatric and Adolescent Rheumatology Network).

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 those who care for us. I’m Paul Evans. And this edition of Airing Pain is supported with Grants from Trefoil House, the New Park Educational Trust and WCH Trust for Children.

Sharon Douglas:

[Over the background noise of the conference]

Can everyone hear me? Hi guys, if you just bring your children to the different age groups that they are meant to be in. Thank you.

[Male voice and Douglas call out directions to attendees as to where to gather in the conference hall by age]

Evans:

In March this year, that’s 2022, at the time of recording, SNAC – that’s the Scottish Network for Arthritis and Children – brought together families affected by Juvenile Idiopathic Arthritis – JIA – and some of Scotland’s leading paediatric rheumatology experts for a weekend at Crieff Hydro Hotel in rural Perthshire.

So, SNAC Chairperson and Co-Founder, Sharon Douglas, welcomes twenty-three families, including the parents of twenty-three children, between the ages of eight and ten who have JIA and their two- to fourteen-year-old siblings.

Douglas:

It’s been so nice to be back and welcome everyone.

Many families have been booked on this weekend for two years and it’s so nice that we’ve finally got back at Crieff and are running our family weekends again. I think this is about our thirteenth weekend so it’s been nice to keep that tradition going and I hope everyone has a wonderful time.

The main thing is that we all meet people, we chat, we find out more about JIA, our kids give each other tips. The kids will get some fun but they will also meet other children like them and they’ll know that they’re not the only child with arthritis which is, for me, the main aim of the weekend. That they make some friends, realise ‘It’s not only me’, but also meet their clinicians and hospital staff in a friendly, relaxed environment and have – make sure that you sit with the clinician at lunchtime, or anyone else, just – they’re here to have a weekend with us too and they normally feel in the clinic [that] it’s so rushed and it’s so busy so it’s nice to have time to just chat with families over lunch, and everything else, and nice for your children to see them in a different setting.

So, if you recognise your rheumatology professional here at the weekend make sure you say hello to them. So, we’re even more grateful for them for their time this weekend and putting the program together because although the SNAC Committee, can do lots, we can’t actually do the education part because all of SNAC Committee are parents with JIA so we all know what it means to have a child with arthritis but what we can’t help with is the education part so it’s so vital that they come and help us with that.

So, our main aim for this weekend is for the kids to have a ball and to meet others and for you guys to do the same.

Child speaking to another child:

Do you lie to me? Did you lie …? [laughter]

Evans:

What’s he doing?

Child 1:

Laser tag.

Evans:

So, how’s that work?

Child 1:

[Noise of ‘shooting’ in the background]

So, you’ve got these guns and you have to reload you have to shoot, like, the other team. It’s like really fun because you get to, like, run around and you get to like shoot everybody. But it’s just pretty much really fun.

Evans:

So what team are you on?

Child 1:

I’m Team Blue, definitely.

Evans:

Team Blue – and Team Blue are winning?

Child 1:

I’m not so sure about that but, we’ll see. I think we’re really good though ‘cause, you know, we can run much faster.

Evans:

Are you enjoying yourself?

Child 1:

Yes, I’m enjoying myself very, very much.

Evans:

Good, see you later.

Child 1:

See you later.

Evans:

There are many ways to have a ball and laser tag is just one of them. Those activity sessions were integral to the form of the weekend.

For the educational components the group was divided four ways by age. So, the parents, the five- to eight-year-olds, the nine and tens and then the eleven-pluses. Each group had its own age-appropriate workshops delivered by specialist clinicians.

The parents’ introduction to JIA was given by Julie Duncan. She’s one of the General Paediatricians in NHS Lothian District General Rheumatology Clinic and also in Edinburgh.

Julie Duncan:

[Addressing the conference]

Juvenile Idiopathic Arthritis means that you’ve got inflammation in your joints occurring before your sixteenth birthday. The ‘idiopathic’ means we don’t know why some children get it. We know that there’s some trigger factor. Some infection can trigger arthritis. Some people have got a genetic susceptibility but we don’t really know why one particular child will develop arthritis at any given time.

And then the arthritis is pain and swelling within your joints and it has to be there for at least six weeks because children can get swollen joints because they’ve injured themselves or they’ve had an acute infection and they get a bit of a swollen joint that might just last a couple of weeks and then settle down.

And it’s also excluding other causes of joint swelling. So, some children who might have a condition called haemophilia, [meaning] you can bleed into your joints so that could cause swollen joints. Or you can get infection in your joints and that can cause them to be swollen, so there’s other reasons that you can have swollen joints and most of the investigations that we do initially are to make sure that there’s not other conditions that are present and that it is Juvenile Arthritis.

It’s an autoimmune disorder and it’s when the immune system is unable to recognise the joint as part of themself. The body is attacking the synovium which is within the joint. That’s the bit that produces this sort of oily lubricant and that should just be like lovely and free-flowing so that your knee can bend easily. But, when you develop arthritis, you get inflammation within that synovium and it becomes an angry, hot, swollen joint. And the joint can become stiff because that oily lubricant isn’t there to help the joint move. And it’s the commonest form of long-term inflammatory joint condition in children and young people and it’s not the same as rheumatoid arthritis which is a common condition in adults. Children present differently. What’s going on within their joints and their body is also a different process and it occurs in about one in 1,000 children.

And there’s different descriptions that we give to JIA. Some children just have a few [affected] joints. Usually, we describe children with less than four [affected] joints, sort of maximum four joints, as ‘oligoarticular’.

If, within the first six months they have four [affected] joints but, after that, they go on to develop more, we talk about ‘extended oligo’.

If they’ve got lots of [affected] joints, which often involves the hands as well as some of the other joints, then they’ve got ‘polyarticular’.

For some children it can be associated with other medical conditions such as psoriasis, and that can either be within the child themselves or, if brothers or sisters or parents have got psoriasis and then the child develops arthritis, we’d refer to it as psoriatic.

Some children can be much more unwell. They have temperatures, they can have skin rashes and they might end up in hospital with it. And this is known as ‘systemic’. Systemic as in the whole body is affected, more than just the joints. And then tendons join the muscles to the bones and, in some children these, the tendons, can be inflamed as well as the joints themselves and this is known as ‘Enthesitis’ or ‘ERA’.

And I just wanted you to have a think for a few minutes about, sort of, how your child or other children might present, either initially with arthritis or, once they’ve got the diagnosis, what symptoms they might have because it’s easy for me to say here they get pain, stiffness and swelling in their joints. Most children don’t have a clue what stiffness is. They don’t rock up and say ‘Oh I’ve got stiff joints’. Swelling’s quite subtle for parents and for us. We often are not sure whether joints are swollen or not, particularly in young children.

One of the things I’ve heard a lot about is children who used to get out of their bed, probably annoyingly at the weekend, they would jump out of their bed, come through, climb in to mum and dad’s bed and then often they just, they don’t get out of bed. It’s all of sudden- well not all of a sudden, but over time they wait in their bed until mum and dad come and get them. Or, if they do get out of bed all of a sudden, you can hear them. They’re kind of thumping through the floor because their joints are not quite as free-flowing. Just daily activities – they might struggle to brush their teeth, they might have [previously] washed their hair independently – now they’re struggling to do that.

Lots of children don’t like getting their shoes and socks put on if they’ve got inflammation in their feet. For ages they have been absolutely fine with it and then, all of a sudden, they just don’t want to put them on, it’s a bit of a fight to get them out the door and, especially that’s common with children that are young toddlers and it might just be oh are they having a bit of a toddler tantrum sort of thing, but actually it’s because it’s sore but they don’t understand how to tell you that it’s sore.

It’s often something that people don’t tend to notice to start with but, once we treat it and they start to get better, that their whole personality changes but it’s so gradual that you don’t often notice and it’s only when they get better that you think ‘Actually they’ve come alive again’. They’re much happier, they’re much bubblier, much more confident again.

Evans:

We heard from Sharon Douglas, Chairperson and Co-Founder of The Scottish Network for Arthritis and Children welcoming everybody earlier. So, why is there a need for an organisation like SNAC?

Douglas:

When my daughter was diagnosed with arthritis when she was at the age of two, it felt a very lonely time because we didn’t know anybody else who had arthritis and I felt that we were the only people that it had affected.

So, we went on to a parents’ event up in Aberdeen that the hospital staff had put on for parents to find out information about JIA. So, we had gone up to that and we met lots of like-minded parents who also felt quite isolated and quite alone. And we chatted with the hospital staff who were able to support us in setting up in this network for arthritis in children.

So, we, basically, how it started was we got all the families together, we did an email mailing address and then we just asked people ‘Would the network be helpful and do you think that it would help other parents and your children to realise that they’re not alone?’ And that we could work together so – and what we did was all done by asking the parents what they felt would be helpful.

So, we do events, as you know, and Information Days, education is key but really, I think it’s just [important for] children and parents to meet other families living with the same condition.

Evans:

What they say is that when a long-term chronic condition enters a family it’s not just the person with that condition who suffers and has to adapt to it. The unwanted guest has to be dealt with by the whole family.

Douglas:

And actually, that’s probably the key to what SNAC does. In fact, every event that we do, we always have parents and siblings. We never just keep [restricted to] children with arthritis. Their whole family is involved.

Laura:

We are Laura and Jamie and we’re here with our daughter Sarah who’s eight who has had juvenile arthritis since she was three years old.

She was diagnosed with the condition so we’re here to learn more about how to help Sarah, support Sarah in managing it. I suppose it’s quite an emotional thing actually [to] just really try and be better informed as parents to try and navigate through this journey.

Jamie:

I think it’s good for her also to see that there is [sic] other children, you know ‘cause she doesn’t have any other friends or family with this condition at her age. So, coming to a place like this she gets to play and see other children in real life. She’s not alone, I suppose, with the condition. We were here three years ago but she was only five at the time. So hopefully now she’s an age to have a better understanding as well.

Evans:

When you came here three years ago, how did coming here change her and your approach to her illness?

Jamie:

For me it probably helped us realise what she’s going through every day ‘cause we almost got into a bit of a habit. She had a weekly jag and she would get the weekly jag and go off. I think she’s maybe one of the luckier ones ‘cause we did hear from other children who had to get jags maybe once a day or had a really tough time with it. Whereas I think it showed us actually Sarah was maybe one of the more lucky ones at that time.

Laura:

I think ‘cause she was so small it almost just became part of life. You know when she’s been getting injections for so long it just became part of how things were. But coming, I think, last time we, we certainly learned better coping mechanisms like around, you know when she’s having her jag having, you know, a teddy or the environment that she was in and you know the people that she wanted in the room – like maybe her brother to hold her hand and things like that – so you know it was nice in that way ‘cause you also learn a lot from the other parents that are here because you tell each other stories about what your life’s like and you learn other ways to deal with situations.

I actually think that’s probably been one of the best things is chatting to other parents. Though the presentations are all wonderful as well, you know they’re so informative, but you just learn so much from other parents that can empathise with exactly what you’re going through.

Evans:

How did you know when the condition started? When Sarah was three – how did you know that something was going on?

Laura:

Oh, it took a long time to get a diagnosis. She had pain in her ankle. It was swollen, it was red, it was hot.

Jamie:

Sometimes we would go to the GP ‘cause she’d complain of sore ankle but when she was in the doctor’s surgery they’d be, you know, twisting her ankle around, moving and it wasn’t sore so it wasn’t maybe flaring up so they would send us away and we weren’t really sure ‘cause we knew she wasn’t making it up as such but it was very strange how one day she was in agony, you know she was screaming in pain, but the next there was nothing at all. No pain so that it did take a wee while – a good kind of couple of months before we got to the bottom of that initially.

Laura:

At one point we went to A&E because it was so bad the GP couldn’t do anything apart from say give her Paracetamol, give her Ibuprofen. They didn’t know what was going on. We went to A&E, they scanned it, they said there’s nothing mechanically wrong with her ankle so this journey started and, like I say, it took a few months. But she was getting to the point where she was lying in bed and the weight of the duvet on her ankle was making her cry ‘cause it was so painful and it was just getting worse and worse. She couldn’t run at nursery, she had to sit with a chair out in the playground. We had to carry her lots of places or use a pram as it got worse. And then finally we got a diagnosis which was very emotional. We did not see it coming at all. Yeah…

Jamie:

Well for a three-year-old to be diagnosed I suppose with arthritis – it’s not something we would ever have really expected. I suppose it opened up a bit of a new world.

Evans:

Was there any relief to get a diagnosis?

Laura:

There really was because to get that ‘OK, we know what it is’ – although it was quite devastating it was a good thing in that we knew…

Jamie:

It meant you could then move on and look at the treatment options.

Vanessa:

[Addressing the audience]

Hi, is it ok if I just start? I’m conscious that I don’t want to keep you guys too long ‘cause it’s gonna be nice and sunny hopefully outside.

So, I’m Vanessa. I’m a Rheumatology Nurse in Edinburgh and I’m just going to speak to you a wee bit about medications. Why use medication? What medications do we like to use for JIA and how are medications given?

So those are really the big questions and what are the side effects of those treatments?

So currently there are no cures for JIA but what we want to do is control the disease and we want less inflammation obviously and less joint damage so those are our reasons for moving on to giving treatment. It’s not ‘cause we’re mean and we want to make our children suffer with injections and infusions and things. It really isn’t. We’re definitely not about that.

So, we are looking really for a better outcome for child and patient. So, we have happy children, that [are]able to get about and do the things that children should be doing. So, you can be happy as well ‘cause when your kids are in pain you’re not happy and basically so they can do the things that kids are meant to do, including school.

So, we also want to think about their long-term outlook. You know if you ignore the fact that they’ve got arthritis and you let joints get damaged the future is not particularly great. We can replace joints but only to a limited degree and they only last for a few years.

So why do we use medications? To get you well in the first place. To keep you well. And then we have a plan for their ongoing in the future when medications work. If there’s problems, what do we do next?

If you were on the waiting list to be seen to come in and have your first appointment and somebody phones up and they say my GP’s referred me, my child is really in pain. Some of the things that we would say to you on the phone would be ‘Are they asthmatic? No? Can they then take some ibuprofen – that might tide you till we get you seen, because we would wait six weeks usually till a patient is seen for the first time and then when they are seen that very day if there were a little bit of swelling, not a huge amount, we might say we’ll move on to a non-steroidal anti-inflammatory and, that picture that Julie had up earlier in the presentation had a child with really quite swollen knees, and, if that was the case, we would say look we need to settle that down quickly, we’re going to use some steroids and you would get those steroids either as a tablet or as an IV infusion, put in a cannula. Or we might do it as a joint injection.

Joint injections are great because you can put a small amount of targeted steroid exactly where you want it into the joints that are affected. They’re usually pretty fast in working. Most patients will get results within a day or two, at least within a couple of weeks if it’s going to work.

And now, for most of our patients, if they’re not too small, we can get away with doing it under some gas and air – some giggly gas some Entonox so we can do it quite nicely while they’re awake without needing to have a general anaesthetic.

Our next line of treatment after that is usually, if we don’t think a joint injection on its own or a short course of steroids is going to settle things down, then we would usually move to what we call DMARDS which are ‘disease modifying anti-rheumatic drugs’ and the one that probably everybody in the room has heard of is Methotrexate, would that be fair to say? Yeah [laughs] that tends to be our first line treatment and that comes in either a tablet, a liquid or as an injection which we can now use in like an auto-inject pen which is so much better.

Then our next line, moving up in the treatment, we would be coming on to biologics, so that’s a particular medication that is targeted towards changing or switching off a part of the immune system so helping to control that overactive inflammation.

Evans:

[Background noise of children playing]

I just have to explain what’s going on here. Two girls are dressed in these enormous bubble-like sumo wrestler suits and they’re charging at each other trying to push each other over. And the winner is the one who can push the other one out of the ring just like proper sumo wrestling.

Kay Sinclair:

My name’s Kay Sinclair.

David Sinclair:

And David Sinclair.

Kay:

And our daughter is Eve.

Evans:

Eve – Did you win?

Eve Sinclair:

Oh no, it’s 2:1 – well 3:1.

Evans:

Yeah, but you’ve got your own back because you pulled him down from behind after the game finished.

[Laughter]

David:

Gamesmanship!

Evans:

Are you enjoying yourself?

Eve:

Yeah, it’s fun.

David:

And you’ve made friends?

Eve:

Yeah.

Evans:

So how does a weekend like this – meeting the doctors and the other parents? What’s it mean?

David:

It’s a lot more relaxed than meeting the doctors like in a hospital environment. It’s a lot more relaxed so you can ask any questions that you maybe wouldn’t think of when you’re at the hospital. And it’s obviously quite fun getting to play the games and see the kids kinda meet other kids that have the same condition as them.

Kay:

It’s nice hearing other parents’ question as well some things ‘cause, like you say, it’s quite hard to remember everything that you want to ask at the same time.And then someone might bounce in and say something that you were thinking. So yeah, it’s quite good being in the relaxed environment. I like it better than being in a hospital or a clinic.

Evans:

And I guess you have questions for other parents and other parents have questions for you.

Kay:

Yeah, absolutely yeah. Uh huh, ‘cause one of the mums I was speaking to there was saying that she’s going through the process of changing medication and then I obviously was saying that we’re in the process of Eve stopping medication so that was quite uplifting to hear I think from our side to them as well. So, there is hopefully, fingers crossed, some of the children will grow out of it.

Shardie Sutherland:

I’m Shardie Sunderland.

Robert Nightingale:

I’m Robert Nightingale.

Hayley Sutherland:

Hayley Sutherland.

Evans:

Hayley, you’ve just been sumo wrestling with Eve. How’d it go?

Hayley:

[Laughter]

It was funny.

Shardie:

It’s important for the children to be able to meet and see that there’s more people like them ‘cause it is so, you don’t know anybody with it. I mean, I did think that children never got it, it was just older people you know, that was my opinion. So, I was so shocked when they diagnosed Hayley with arthritis.

Evans:

How old was Hayley when she was diagnosed?

Shardie:

She had just turned six. She was just six. And now she’s ten. It’s gotten a lot worse since she got it. It was just her knees – now like we’re waiting. She might be getting joint injections in her jaw, her shoulders, her wrists, her hips, her knees, her ankles we’re told.

Evans:

How do your friends feel about you having arthritis, Hayley?

Shardie:

[Addressing Hayley]

What – do they make sure you’re OK? [Hayley agrees] They worry about you.

But I don’t think the children understand how hard it is. I think that is the problem is that…

Hayley:

I think they think I’m a like they think I’m very different to others.

Shardie:

Different? No, I think, I just don’t think that they understand how hard it is ‘cause like a lot of things she’ll have to sit out from doing sometimes ‘cos she’s really sore. A lot of your closer friends understand but I don’t think they just understand fully.

Vanessa:

[Addressing the conference]

One of the big problems when we talk about medicines is the potential of side effects. So, just to simplify this, when we’re talking about side effects it’s the unwanted effects so in non-steroidals that might be something like a potential for a stomach upset which we can counteract by using other medicines, but, then that’s another one for your child to take, and there is no such thing as a medication that doesn’t have the potential for side effects.

So, we try to get away with as little as we can. I think steroids are the medications that we now consider the most toxic that we use and we try and use them sparingly because they’re great at switching off inflammation but, long-term, to keep using high doses of them can cause all sorts of problems so the things that teenagers, for instance, don’t like is the weight gain, the moods, the acne, that kind of slightly rounded face. Those would be short-term, generally, side effects. But, if you continued to use steroids and you get weight gain, you also can have that increased chance of developing diabetes, you can have risks to your blood pressure going up, bone density can be a problem if we’ve used a lot of steroids so that’s not great for long-term use. Fantastic for short-term so we often get kids they go ‘I just want to have more of those joint injections please, because they work’ [laughter] ‘just get that over and done with and then we can move on’. But long-term we can’t keep doing that. So, we couldn’t keep treating a knee with arthritis every two months with another joint injection for instance. If it kept coming back, we have to move on to other treatments because we can’t stick at steroids.

For biologics each one has a slightly different function and each one works in a slightly different way so some of them will switch off certain parts of your immune system. The anti TNF’s we’re aware that children shouldn’t have things like piercings while they’re on them because they might not heal up so quickly. So, whilst you wouldn’t think of that as a traditional side effect, you know, you’re talking to teenagers that want to go and get their nose pierced or want to do things and you’re like ‘Oh, here’s another drawback for having this chronic condition, I can’t go and do what I want to do’. For most of them they laugh and say that it’s not a problem but we’d ask them not to drink non-pasteurised milk or eat smelly cheeses and things and you’re like yeah that’s not an issue for most of us [laughter] but I always remember one boy who was, I think, twelve and I asked him what his favourite food was and it was lobster. So, I was like ‘OK’ [laughs] you have more expensive taste than me! In a different league slightly!

[Audience Applause]

Alison Ross:

Hello everyone. My name is Alison Ross and I’m a nurse that works in Aberdeen with children with arthritis and, this afternoon, we are going to look at coping mechanisms with Juvenile Idiopathic Arthritis.

But I know not everybody here has arthritis. You either have a brother or a sister that has that, is that right? Yeah? OK so we’ll talk a bit about that as well.

So, how does arthritis affect a young person?

So, it’s your own immune system attacking your joints and we don’t know why it does something strange like that and the symptoms are you’re stiff, especially in the mornings. It’s really hard to get going and it’s really you at your most sore. We know there’s swelling and tenderness at the joints, some people have a rash depending on what type of arthritis you have. Most people have some type of pain and some people have restriction in their movements. Maybe they’ve got a stiff arm or a stiff elbow, stiff ankle with that. Sometimes some people feel a bit irritable and angry and feeling a bit sad and ‘Why me’ but most of us feel like that, that’s not unique to children with arthritis.

So why do we bother treating arthritis. Well, we want everyone to have healthy joints. The idea is, if you’re affected by arthritis when you are little, when you grow up you can do everything that you want to do, you’re pain free, you’re comfortable, you’re growing because we want – we see some children who are really small with arthritis. And as they get older, I’ve been in the job twelve years, I’ve seen two-year-olds that are now fourteen so we see them right through their whole growing spells. We want that to do well.

So, we all know that our brothers and sisters, or you yourselves, take medicine so the medicines can sometimes be tablets. The medicines can sometimes be an infusion in a vein. And a lot of people take injections, alright, and we know that a lot of the drugs have side effects, so you maybe feel a bit sick, you feel a bit grumpy with it, you can have increased infections. Coughs and colds with it – come around a bit more frequently and we do this funny thing – we do these blood tests quite a lot. I’m sure that people who have got arthritis are sick of having blood tests but it’s really important that we do that because we need to know that inside everything is working ok.

So, what do we mean by inside?

So, we’re talking about your liver and your kidneys are all working properly so we can do that by looking at what blood says. Sometimes the treatments can lead to lots of anxiety because we do a lot of needles in rheumatology, don’t we? We do do a lot of needles. I wish we didn’t.

What helps with coping with taking medications?

Be open and honest with the doctors and nurses that are looking after you. And we’ve looked after lots of boys and girls over the years and we’ve heard lots of stories of people doing different things. We’ve had people saying I take my meds but actually don’t. I actually spit it out or I say I take it and then I hide it in the cupboard, in the bedroom. We’ve had a few people have had a stash of medicines in their bedroom. Or people say, well we just pretend that we take it and we don’t let on to anyone.

So yeah. Everybody’s different and they are hard medicines to take. And it’s always good to go back to the doctors and nurses looking after you and say ‘This is really hard for me to take this’, and give a reason why and we’ll try our best to help you.

All of the doctors will give you some sort of choice in your medication as to how it’s taken so it might well be that what works well for you is an infusion but you can have a choice – you can have it in a drip or you can have it as an injection.

Not many of them come as a tablet but there is some choice with it – also how frequently you can have it. So, you can talk about what works for you. Some people say ‘I can’t stand needles, but I can take the actual drip going in, I don’t find that sore’ and some people are like ‘Oh no, I don’t want to spend all that time in hospital – half a day having an infusion or two hours of my life, I don’t want to do that no’ so we’ve got lots of wee tricks that we use. I don’t know if any of you have used numbing creams and you can get anti-sickness medicine against Methotrexate and we use Buzzy, a little device that can help with injections to stop it being so sore, and there’s something, this funny thing, called meditation techniques. And some people that take some medicines they look a little bit different for that time in their treatment – maybe a year or two years. And the ones that do that tend to be the steroids and the way that you look different when you take the steroids doesn’t last once you stop taking it, it fades away – all the symptoms. Sometimes some people, have a slightly chubbier face, they can feel more grumpy with it, they put on a bit of weight, but that comes off again and people look different.

So, what helps?

We’re always on about being active and that’s what’s great about this weekend, isn’t it? Everyone here is really, really active. You’ve all been out doing Laser Quest? Yup, before lunch? Fabulous, good. And you need to take time to learn what works for you because I’m not sure that everyone was able to do Laser Quest today. Am I right in saying that? Maybe somebody went off to do some different things, yeah? And staying active might be low impact exercises, so it might be something like swimming. I don’t know if some of you like to swim? It’s really important for your arthritis. Maybe you do yoga? Or meditate with it. Has anybody here, pop up your hands, do you use any Apps on your phone that help with keeping fit?

Have you heard of The FitOn App? It’s a free App. You might want to have a look after this session that helps you do exercise at the level that your fitness is at. It’s not designed for an athlete that is running lots and lots and lots of miles, or doing athletic things. It might be something you want to do and something all our physios say as well is we don’t want you doing boom/bust exercises so things like ‘Great, I’m going to go out today and I’m going to cycle my bike for four miles and then I’m going to run in with the dog and do this’ and then, for the next two weeks, you’re not able to do anything. That’s not helpful.

We’ve to remember the physio therapy is a treatment in arthritis but it targets specific joints so we don’t send everyone away to do physiotherapy. It might well be you’ve got a bad knee and maybe the muscles here are a bit not – as pronounced as they would be – and matching [with] the other side. So, the physio does specific exercises for that.

So, coping with emotions. Keep the lines of communication going. I know you’re all looking at me thinking when is she going to end and it will be soon. So, it’s good to talk to your friends and family and meet all these people here today.

Take time to relax. Take breaks from the screen and lots of people spend a long time on their phones or their iPads. Remember everyone is different. None of us here today, with the exception of two young ladies who look alike, I’ve noticed everybody looks different. Everyone has good and bad days. And be kind to yourselves.

Kirsten:

My name is Kirsten and my daughter, Rosanna, who’s eleven, had JIA diagnosed at fifteen months. Had steroid injections, started on Methotrexate and it all went fairly well and then at four years old she was then diagnosed with Uveitis. So that was then changes of medication and in general she’s really, really well. Just some ups, some downs and when it’s the ups you’ve just got to go with the ups. She just copes so well.

Evans:

How old is she now?

Kirsten:

Eleven. She just gets on with it and she hides the pain a lot. She knows herself, if she’s in pain, she’ll take medication or just slow down with what she’s doing. And she knows if she overdoes it the day before, the next day she just needs to rest.

Evans:

It’s often in these occasions where you concentrate on the kids. But what about the parents?

Kirsten:

Yeah. It never stops, never stops and hospital appointments – just you never get a break and sometimes you just want a couple of months off, especially with injections when you have to do injections every week – if they get upset. Sometimes the child is OK and they’ll go through a phase of being OK with their injections and then they’ll start to get – they hate them again and they’ll get sick and then that’s when you just want time out and just take time for yourself. But you’ve got to just keep going for the child.

Ross:

[Addressing the conference]

So, we’re going to look at coping with JIA as a family. What makes it better.

So, on your tables today I have put out ‘What is a Good Day?’ and what I’d like you to do is, I did this yesterday in my office before I came here, is I’d like you to draw around your hand. And you’ve got the five fingers and I want you to tell me five things that make it a good day.

So, yesterday I did mine in my office and I wrote that I’d slept well. So that’s a good day for me. It was sunny weather, even better day for me. I had exercise outdoors, we had our favourite meal for tea and I felt happy with life. So that was five things. So, see if you can do that. There’s no rush and we’ll go around and have a chat about that.

Hmm but then my life is not perfect. I have bad days. Look at my bad days. So, I thought about what was a bad day, which wasn’t that far away – I think it was the Tuesday of this week – so I slept badly, I’d sore feet because I’d done a lot of walking with my dog -feeling a bit grumpy because I was a bit tired. There was no milk in the fridge when I got up in the morning – made me very upset – and we had a fall out over it as well.

So, my life is not perfect. So, we’re just looking to see what would be a bad day for you and when we look at what everybody does, we can come together as to how we think we can make things better.

So, on your other page, we have ‘Things to Make It Better’. I didn’t write the title on it because you might want to write a different title on it.

So, I thought about my bad day and I thought what actually made me better. So, there’s no rights and wrongs with this. There’s no marks for spelling or anything else that’s there. We want to know what you think.

So, I put down. Hug a family member or pet. I’m very partial to a collie dog and I love her dearly so I gave her a wee hug. What’s your favourite film? I’ve got quite a few that I particularly like to see. Take a break from the screens because I’ve done a lot of IT work this week and exercise outdoors and read a book. So, stepping down and chilling out. So, if we all write down this and then we can come together and have an idea and see if we can identify things, that actually make things better for all of us not just ‘Oh it’s alright for you, you’ve got a dog so it makes you happy’ or do whatever – what works for you.

So, a bad day might be, well, you know ‘It’s a Tuesday, get an injection and have a trip to the hospital, have to have a blood test, fell out with my sister, didn’t get my favourite tea’ – so whatever you think. There’s no rights and wrongs. Just write them down and we’ll have a look and see if we can come to some conclusions.

Karen Barrie:

I’m Karen Barrie.

Gordon Barrie:

Gordon Barrie.

Evans:

So, you have a child here?

Karen:

Yes, Kathleen who’s ten. She was diagnosed when she was sixteen months old.

Gordon:

She’d only just started walking and then…

Karen:

Yeah, yeah or she got it sixteen months and then got we, we got, got a full diagnosis at eighteen months. Yeah, so it was over those two months to get her diagnosis. What was wrong so yeah, she was tiny.

Evans:

Well, I’m just thinking of my own grandchildren and my own kids. How on earth would you diagnose an arthritic condition in a sixteen-month-old child?

Karen:

So, she started walking at fourteen months. She was a wee bit later in walking and then just one day she came home and she’d had a fall at nursery and she developed a limp and it just didn’t get better. So, it was her doctor that thought maybe she had a toddler fracture so we took her up to the A&E hospital. She got X-Rays and there was, there was nothing, so we had a couple of months of keeping going back with this constant limp that wouldn’t get better. Eventually it was the orthopaedic doctor took her in for an MRI because she wasn’t right at all. She was grumpy. She was really not herself at all and then had this limp and eventually with the MRI they realised it was arthritis in her knees.

So, it was actually in both knees. Although she was just limping with one. If she didn’t have the limp, we wouldn’t have known what was wrong. So, she then had her steroid injections in her knees but it then spread so she had the extended Oligo. So, it then moved around until they got it under control and every now and again it will flare up into different joints. Usually when they take her off her medicine and then she kind of flares back up again. But we’ve had a couple of years, fingers crossed, that’s it’s kind of been OK, but she’s also got Uveitis. So, it also appeared in her eyes a few years ago. So yes, she had to then switch medicine and things so. But, at the moment she’s, yeah, you wouldn’t know she had it. Which is good.

Gordon:

And she does loads of sports and ballet and gymnastics.

Karen:

Oh yeah, she does loads of dancing.

Gordon:

So, it’s not held her back at all.

Karen:

No, which is great.

Evans:

What surprised me most about being here this morning is that, I mean, I’ve just been watching sumo wrestling, they’re all shooting each other with laser guns at the moment [laughter], goodness knows what they can do to each other next. You would not think that these children have life changing pain conditions.

Karen:

I know.

Gordon:

They just get on with it. As kids do…

Karen:

That is the good thing about them. She’s always just kind of got on with it apart from, obviously, when she couldn’t communicate with us. Other than that, she has just got on with it. It’s a bit of a battle with the medication now and again, although it seems to be a bit settled now she’s a wee bit older, but we did have a phase where she didn’t want the injections and she’d forgotten why she was taking them because she hadn’t had a limp or anything for a wee while and she’d been on it a few years, so she’d forgotten why she was taking it. And you know it was ‘Why do I have to take it, like I don’t know why, and why is it only me?’.

That’s why this is great because she is meeting other kids that have the same thing ‘cause she’s not really met anybody that has the same condition as her before. So, this is great for her. Yeah, It’s the constant medication that’s the main thing for them I think but that makes them able to do this.

Gordon:

Yeah. I think they get to a certain age, it was at six or seven, where they start to realise their friends aren’t in the same position. You know, they’re not getting fortnightly injections, or they’re not having to take a tablet every morning. It’s only once they get to that age that they kind of realise that’s not the norm because every kid thinks their norm is the norm until they discover otherwise, and it’s usually that six or seven mark and they realise.

Evans:

Do her circle of friends, school friends, realise that something is up and treat her differently?

Karen:

I don’t think so. I think they forget that she’s got arthritis. They do know but, because she’s been so good recently, they don’t remember that she’s got it, I don’t think, half the time, and she does quite a lot of dancing. And she does ballet and goes to the Royal Conservatoire for ballet and stuff and I don’t think they realise she’s got it at all.

Gordon:

No, it’s not changed anything. Not made any allowances for it but they’ve not needed to so…

Karen:

I think it was a bit different when she started school, when she’d had a break off her medication and her arthritis flared up again and she couldn’t get in quick enough to get joint injections. So, she started school with a limp and I think people did treat her a little bit differently then. So, I think, when it’s visible, if you’re flaring and you’re not moving quite so well, then they would start maybe to treat her different – ‘Why are you doing that?’ or ‘Why can’t you keep up’ or, you know, she had a wee bit where she couldn’t keep up with her friends so she would get a wee bit lost. You know a big playground and her friends would run off and she couldn’t. But, other than that, when it’s under control, no it’s fine.

Ross:

[Addressing the conference]

So, how many people on a bad day said that they were sore? Five, that’s quite a common thing, isn’t it? About having a bad day? How many people are in a bad mood on a bad day? Oh Wow.

So, it’s quite common these themes, isn’t it? Wow o can’t do the things you want to do, or tasks that you want to do. Ten, yeah, right hands up, who feels tired? Will we just say everyone on a bad day [laughs].

Do you know what? You’re not going to believe this you’ve nearly all written the same things. We’re all kind of similar, aren’t we? So, friends not available mostly – so on a bad day I’ve got here – no motivation. How many people on a bad day just can’t be bothered?

The back table want to tell me what you wrote on your good day? What, what’s good for you on the back table?

Child 2:

[Shouts out]

Nice and sunny.

Ross:

OK, so good weather.

Child 3:

[Shouts out]

Going out with my friends.

Ross:

OK so going out with our friends, yeah, absolutely.

Any ideas on the back table?

Child 4:

[Shouts out]

Football.

Ross:

Football, yeah, yeah, we’ve got sport here. So, we’ve got favourite food, we’ve got Pop Tarts for breakfast, better than my milk that wasn’t in the house, isn’t it? Yeah, definitely Pop Tarts for breakfast.

Playing with friends.

A warm day.

Listening to music.

Favourite dinner, sunny days, playing with friends, spending time with my dog, favourite films, slept well…

So, looking through all the comments about what can make it better, there’s definitely – I can’t pick out from any of these who has arthritis and who doesn’t. We all think and feel the same whether we do have something wrong or not. So, if we look at things – we all like to sleep well, we all like nice weather, we all like friends and to be popular, and to be liked and to be with people. And we also like our space as well. Because people have written ‘Time to say “I want to be on my own”’.

People like music. There wouldn’t be a music industry if we didn’t would there? So obviously people like that as well.

So, we can conclude that we’re actually not that different.

Tammy Fraser:

I’m Tammy Fraser and this is Tim Fraser. Our son, Sam, has JIA. We’re from the Shetland Islands – as far north as you can possibly go in Scotland – we’re the second most northerly island in Britain. An Island called Yell. Sam didn’t really know anybody his own age with arthritis so it was, yeah, a way for him to kind of see that he’s not alone. It’s not just him, there is [sic] other kids his own age that suffer with the same thing.

As parents it gives us a chance to speak to other parents and, you know, find out their experiences of just having a kid with JIA, but whether it be medication or just day-to-day living, our uniqueness or how we’re able to get treatment for Sam because of where we live, it’s a bit different and it just that gives another perspective I suppose.

We’re part of the SNAC family group on Facebook which has been really helpful. And if we’ve ever had any questions, we can put it on there and parents are really good at responding. And our local health centre, our local practice nurse, has been excellent because she’s done extra training with the nurses in Aberdeen so that we can get information from her rather than having to go to Lerwick or go to Aberdeen. She’s been brilliant because, without her learning how to work the injections and things that we give Sam, we would have had to go to mainland Shetland to get training at the hospital and would have had to go three/four times for them to see us giving Sam injections to make sure we were doing it correctly whereas with Rosemary, learning how to do it and how to show us we can just literally nip across the road to our local Health Centre and it’s taken five minutes, whereas if we’d had to go to Lerwick it would’ve taken the most of the day. She’s been brilliant.

Jo Walsh:

[Talking to attendees]

In you come, if you want to put anything, just put it on a chair or table. Hand gel anyone? Hi, hi everyone, hi.

Right, where’s your badge? Oh, you got it already. Can I do, do you want me to help you put it on? Yes? What’s your name again? Rebecca, that’s right…

Walsh:

I’m Jo Walsh. I’m one of the paediatric rheumatologists based in Glasgow, but working as part of the SPARN network.

Evans:

What is SPARN?

Walsh:

So SPARN is ‘The Scottish Paediatric and Adolescent Rheumatology Network’. It’s a managed clinical network that was started at the same time as SNAC, actually in 2009, and it’s how we manage to look after young people across Scotland with arthritis and other rheumatic conditions.

Whether you live in Shetland or deepest Stranraer or in the central belt you will have the same access to care and specialist treatment wherever you live in Scotland. And that’s one of our major clinical goals for SPARN.

Evans:

Now, on this weekend I’ve talked to people from all over Scotland. I talked to a couple and their children from Shetland yesterday who were the only people on the Island who have JIA. How do you, in SPARN, sort of give them any core treatment?

Walsh:

There’s many ways that SPARN can help there. So, they have access to the team in Grampian so they have clinical staff, a nurse, doctor, physio and OT access there. But I guess if you do live on Yell, which is as far North practically as you can get, you have to accept you have to travel there. But we use video as well to keep in touch with patients. Our nurses are open to emails and phone calls so they are getting good access to care albeit they have a distance to travel for whatever they do in life and we have the same approach for other young patients using the network centres of which there are fourteen in Scotland, each having a paediatrician with an interest with specialist contacts with the rheumatologist.

Evans:

Now another thing about this weekend is parents are meeting their practitioners in a social context and I guess it makes a huge difference.

Walsh:

Yeah, I mean Scotland is a small country when it comes to networks and the whole SPARN network knows each other and, with that, we bring a certain personalised medicine for our young patients and their families. And I think that is a lovely relationship to have. SNAC helps us with that and our close collaboration with SNAC is paramount to the work we do.

Evans:

Another thing I notice is that their pain is invisible. These kids don’t look ill.

Walsh:

So Paul, you’re quite right in your observation. Our aims of treatment for these young people is to ensure that they’re able to do the same as other children and young people without arthritis and, as we saw when we’re seeing our patients in groups, it’s difficult to know who’s got arthritis and who hasn’t. Which means our treatments are working, whether it be medicines, psychological support, physiotherapy, occupational therapy and all the modalities that we use. So our aim is to have young people, albeit on treatment, but in remission of their condition so they’re not experiencing the pain, swelling and stiffness seen in active joints.

Evans:

Some of the parents talk about their children developing JIA at fifteen months. How do you spot that?

Walsh:

You’re quite right. Young people do get arthritis even from the age of less than one year.

In some ways it’s easy to spot because the child may not want to pick something up that they were previously picking up or stopped walking or walk with a limp so it’s quite easy in the young ones to pick it up and I think educating medics, orthopaedic people about persistent swelling being a sign of young people’s arthritis, getting that message out there, is one of SPARN’s goals. You know we educate people to recognise arthritis early because that makes a big difference to treatment.

Evans:

Now, at the other end of the scale, these kids go from being children, young adults to adults – where they’re lost from your service I presume?

Walsh:

Well, I wouldn’t say they were lost from our service. What we do is we have a really effective programme of transition to young adult care and we have good links with our adult colleagues in all the network centres and transition for young people starts at, you know, eleven or twelve. We go through a standard process using a program called ‘Ready Steady Go’ to prepare the child, young person and their parents for moving on up to adult, so I see it as a transition and not getting ‘lost’ to an adult service.

Evans:

And do the adult services work well with you?

Walsh:

Colleagues in each of the network centres, who are interested, will take on the young people with JIA because it’s a different type of arthritis to adult arthritis and they will always have JIA throughout their life. But that programme of ‘Ready Steady Go’ is followed by ‘Hello, Welcome to Adult Services’ and so that works really well.

Walsh:

[Addresses the attendees]

Today we’re going to be thinking about how we treat JIA and make it better, alright.

Who takes any medicine for JIA? Whoa – so medicines are one thing but there’s more than medicines that help JIA get better. One of the other really important things for JIA is keeping moving. In the morning sometimes we feel a bit stiff with JIA. And we had our bandages on yesterday didn’t we – for those that don’t have JIA to make them see how it felt and what it felt like didn’t we? Rebecca it was a bit tight round the knee, wasn’t it? Got a bit sore after a while.

So, to get moving, particularly in the mornings, it’s quite good to do some stretching and moving and maybe even some yoga. So, two people to a blanket or a space down here and we’re going to go and do yoga.

Come on, oh my goodness, could we look to see what Madeline is doing? She is a balanced tree.

 [Addresses Madeline]

Oh my – can we do it on the other leg?

[Addresses the attendees]

Now shall we bend down? Whoa – who feels the backs of their legs? It’s tight sometimes – that’s our hamstrings that were stretching. OK, up we come nice and slow. Shall we stretch out and welcome the world?

Dominic come and welcome the world with your arms out straight. Leila, come on… [fades out]

Kailen Templeton:

I’m Kailen Templeton. I’ve had arthritis for coming up to nine years now.

Paul Templeton:

I’m Paul Templeton. I’m his parent.

Evans:

Now arthritis – people with arthritis JIA cannot do sport, they must keep away from everything – True or False?

Kailen:

False. I play rugby and I started playing it in Primary 5. I played football from Primary 1 to Primary 7. And I’ve continued my rugby and I’m going on next Saturday for SRU development because I’ve been nominated by my Club.

Evans:

SRU – Scottish Rugby Union? So that’s the path to professional rugby? Any concessions made about your condition?

Paul:

No, there’s been nothing. On the form there’s a part if you have any existing conditions and that’s been filled out so we’re all good. We’re good to go.

Evans:

So how did you start that? How did you get into it?

Kailen:

Primary 5 I went to see an All Blacks game versus the Scotland team. And that really got me interested in rugby and I asked my dad if I could start playing. I enjoyed it. Then I went through a phase of not really enjoying it. Then when I got into P6 I really enjoyed it and I’ve really enjoyed it since.

It’s been one of the main highlights of the past few years getting to play rugby with my friends and going through to competitions and then, recently getting nominated for further development.

Evans:

How did you feel about him getting involved in rugby because parents can be fairly protective, I guess?

Paul:

So, there was a lot of trepidation for a start, my wife especially. It’s obviously it’s something he wanted to do so I thought ‘Well we’ll give him a chance and there’s a chance he might not like it’. And fortunately, he took to it like a duck to water.

He had a bit of a role model when he was growing up, told him before, you know, you have to keep trying to push on and try to drive through this and he said ‘Ah but dad, you don’t know what it’s like, you’ve not had it, no-one else has got it plays sport.’ So, I had trawled the internet for a couple of nights and found a rugby player in New Zealand, called James Lowe, who had JIA growing up and was playing professional rugby for the Chiefs in New Zealand. Followed him on Twitter, started ‘liking’ some of his stuff. He started ‘liking’ some stuff back and then it snowballed from there and we’ve stayed in touch.

Evans:

So, we’re not talking Sunday hack players we’re talking about…

Paul:

We’re talking elite professionals. James Lowe. Just missed out an All Black squad for a 2015 World Cup due to shoulder injury. And now he’s playing professional rugby for Leinster, arguably the biggest club in Europe unfortunately [Evans laughs] and playing internationally for Ireland.

Evans:

And you still keep in touch with him?

Paul:

Yeah, I still keep in touch. He just got married on Thursday so I wish them all the best.

Evans:

Thank you very much both. Best of luck with your rugby assessment in a couple of weeks’ time.

Kailen:

Thank you.

Evans:

I hope not to see you thrashing Wales over the next few years.

[Laughter]

Evans:

I make no apology – some national stereotypes just run too deep.

Coming to the end of this edition of Airing Pain 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 well-being. They are the only people who know you and your circumstances and, therefore, the appropriate action to take on your behalf.

Do check out Pain Concern’s website at painconcern.org.uk where you can download all editions of Airing Pain and find a wealth of support and information material about living with and managing chronic pain.

Now I can’t tell you how uplifting it was to spend the weekend with the Juvenile Idiopathic Arthritis families and the clinicians who look after them, so a huge thanks to them all, including SNAC, The Scottish Network for Arthritis in Children who made this family weekend happen. Its website is SNAC.uk.com. SNAC – S N A C .uk.com. It really is an excellent place to find out more about JIA and not just for those living in Scotland.

Thanks also to the professionals in SPARN – that’s the Scottish Paediatric and Adolescent Rheumatology Network who gave up their time to be with their patients and families over the weekend. And their website is sparn.scot.nhs.uk and SPARN is S P A R N. It’s another excellent resource for information and support.

Sharon Douglas, Chairperson and Co-Founder of SNAC opened proceedings on the Saturday morning so it’s only right that she should close them.

Douglas:

It’s been really special this weekend, particularly because we’ve had a family from Shetland, which we’ve never had before. I think there are a handful of families up there. We’ve got somebody from Benbecula and we’ve got somebody from Arran. So, actually, three of the Islands people have travelled to this weekend to meet other children and parents – to meet others and find out more about the condition.

Even when you live in a city, you can still feel alone with the condition if you haven’t met other children and you might be at the hospital but you don’t know if that child beside you has got arthritis or diabetes or why they’re there, so it’s much harder to make the introductions and to have the conversations.

Evans:

I was listening to a discussion between all parents and one common theme seemed to be the issues of getting a diagnosis in the first place. How do you think SNAC could get involved in improving that?

Douglas:

We have to recognise that we’re volunteer parents who have day jobs but I think, for me, it’s all about raising awareness of JIA. And that’s been a key thing for SNAC. It’s on our Mission Statement from the moment we were created in 2009, one of the key things is to raise awareness as well as support families, and I, personally, think that’s our biggest thing so, for a tiny example, from one of the talks today is that some of the parents are going to take leaflets – the SNAC leaflet – to their doctor’s surgery and see if they’ll display them in the clinic or a poster from SNAC and I think we just have to work with the other Juvenile Arthritis charities to help them to raise awareness to and work, maybe, on a campaign with the other charities that are already doing good work as well.

Evans:

The other thing that came out in the discussion is that the advice to parents has changed over the years.

Douglas:

That’s right.

Evans:

I mean somebody saying they had a leaflet some years ago and they showed children in wheelchairs and splints, this that the other, so treatment has come so far.

Douglas:

It really has. And even my daughter is now twenty, so she was diagnosed when she was two. But even in her journey you’ve seen the huge advancements in treatments over the years and, where children might have been in wheelchairs a generation ago, they’re really not now and I think we need to be careful that we give positive advice. And personally, our main support for families is actually trying to find ways to tolerate the medication. Trying to recognise the importance of these drugs that help children and stop the joints from being damaged. [The medication] is trying to prevent that long term damage to the joints but yet [there’s] the horrible side effects. It’s trying to just help families to make sure that they go to their hospital team if they’re really struggling to just open up those communications and have good relationships with their rheumatologists, with their team, with their nurses so they can then discuss problems they’re having and if there is a real problem with the medication [the nurses can help them change]to another one. And the psychology talk yesterday was all about tips of taking, you know, the medicines which is really key because these drugs are making a huge difference to these children’s long-term outcomes.

But all I would say, is like getting families together, children realising they’re not alone, parents meeting other parents – it’s that shared experience of JIA and everybody’s story is very different and it’s a very invisible condition. So, we’re all coming from different places but I think we’ve so much in common and we all recognise how invisible this illness is, and we all just can share lots of experiences with it – just helps families bond and I would call SNAC almost a family of parents.

END

Transcribed by Fiona Clunn, edited by Georgia Gaffney


More Information:

How do you identify illness in young children and coping as a family.

This Airing Pain was recorded at the Scottish Network for Arthritis in Children SNAC’s 2022 Family Weekend at Crieff Hydro, which brings together families recently affected by juvenile idiopathic arthritis and some of the country’s leading paediatric rheumatology experts. 


Issues covered in this programme include:

juvenile idiopathic arthritis, autoimmune disease, coping as a family, rheumatology, paediatrics, support networks, identifying illness in young children, movement and exercise


Time Stamps:

minutes: seconds

00:00 – introduction to SNAC’s family weekend by Sharon Douglas
04:03 – introduction to juvenile idiopathic arthritis by Julie Duncan
07:13 – how does juvenile idiopathic arthritis present?
09:00 – what is SNAC and personal stories from a parent.
12:56 – parent of a child with juvenile idiopathic arthritis shares how they first spotted it.
14:42 – Vanessa Raimondo discusses medication options for juvenile idiopathic arthritis.
18:44 – parents & children share their stories.
21:33 – Vanessa Raimondo discusses medication side effects.
23:57 – Alison Ross discusses coping mechanisms for juvenile idiopathic arthritis & more on medications and treatments.
30:23 – parent of a child with juvenile idiopathic arthritis on her daughter’s journey with JIA, medications and diagnosis.
31:15 – coping as a parent of a child with juvenile idiopathic arthritis.
31: 54 – coping with juvenile idiopathic arthritis as a family
34: 29 – parents of a child with juvenile idiopathic arthritis share their family’s story.
39:10 – how does juvenile idiopathic arthritis make the children who suffer from it feel?
41: 18 – family from Shetland share their story of having a child with JIA in a remote area.
43:27 – Jo Walsh tells us about SPARN (Scottish Paediatric & Adolescent Rheumatology Network) and how they support families with JIA.
47:00 – how to handle the transition from children’s health services to young adult services.
48:06 – Vanessa Raimondo tells us about what we can do (aside from medications) to manage JIA.
49:27 – young person shares their experience of juvenile idiopathic arthritis and still enjoying sports, exercise and success growing older with JIA.
54:20 – Sharon Douglas, chairperson and co-founder of SNAC, conclusion and raising awareness about JIA.


Special Thanks:

This programme exists due to funding from Trefoil House Organisational Grants, the New Park Educational Trust and WCH Trust for Children.

Contributors:

  • Parents (and their children) of 23 children between the ages of 5 and 14 who have juvenile idiopathic arthritis. 
  • Sharon Douglas – SNAC (Scottish Network for Arthritis in Children) chairperson & co-founder. 
  • Julie Duncan – General Paediatrician NHS Lothian District General Rheumatology Clinic. 
  • Vanessa Raimondo – Rheumatology Nurse based in Edinburgh. 
  • Alison Ross – Children’s Arthritis Nurse working in Aberdeen. 
  • Jo Walsh – Paediactric Rheumatologist based in Glasgow, working as part of SPARN (Scottish Paediatric and Adolescent Rheumatology Network). 

More Information:

This is an article by the Brain & Spine Foundation and was included in the March 2022 issue of Pain Press – The Pain Matters Supplement.

Not all disabilities, conditions or illnesses are visible. Chronic pain, alongside a wide range of other symptoms and conditions, belongs to a group of disabilities that are ‘hidden’ or ‘invisible’. These are disabilities that cannot be seen or are not immediately obvious to others. Not everyone with an invisible illness considers or describes themselves as being disabled and some might argue that what they experience is not as invisible as the phrase implies – it is simply that people do not look hard enough or, worse, dismiss what they do see. However, regardless of the condition, symptom or how each individual feels most comfortable describing themselves, people who are part of this community face many of the same burdens. 

Having a hidden disability creates challenges and barriers that those without one simply do not face, and this goes far beyond the day-to-day management of your condition, pain or other symptoms. One of these challenges is letting other people know you may need additional support or understanding in certain situations. Discussing something so personal, so often can be draining and there may be trauma involved or simply details you would rather not share, which is your right. 

Sometimes, a lack of understanding can lead to others doubting you or demanding proof of your condition – such as when using accessible facilities (e.g., toilets or changing rooms) or requesting a priority seat on public transport. These situations are stressful and can have a real impact on your wellbeing – which is why it is important to understand how to access support where it is available. 

Sunflower lanyards 

The Sunflower lanyard scheme was started by the accessibility team at Gatwick Airport in 2016 and is now a globally recognised symbol – designed to enable people with hidden disabilities to discretely access support. 

In the UK, a growing number of shops and public services are offering customers the opportunity to collect and wear a ‘Sunflower lanyard’ or pin badge. Staff are supported with training to recognise the Sunflower and understand that someone wearing one may need a little extra help. 

Visit the Sunflower scheme website to find out more. 

Accessible facilities 

Many supermarkets, businesses and public venues now have signs on their accessible facilities which highlight that ‘Not Every Disability is Visible.’ 

This initiative was kick-started by a young person, Grace Warnock from East Lothian, who has Crohn’s disease. Grace wanted to help raise more awareness and understanding of hidden disabilities or invisible illnesses by introducing these updated and inclusive signs. 

You can find more out about the ‘Not Every Disability is Visible’ campaign here

Making transport more accessible 

‘it’s everyone’s journey’ is a Government-led campaign that is championing equity of access on public transport. This campaign is aimed to encourage everyone to be more mindful of their fellow passengers and to make public transport more inclusive. 

You can also find more information about accessible facilities and other relevant information on the ‘everyone’s journey’ website

Blue badge sign 

In 2018, it was announced that the Blue Badge scheme for parking within the UK would begin accepting applications from people with hidden disabilities. Previously, Blue Badges were only available to those with obvious physical disabilities. This recent change now also allows people with hidden disabilities or conditions to park in disabled bays. 

You can find details on the eligibility criteria and how to apply for a Blue Badge on the GOV.UK website. 

More support is needed 

Although we hope the above information may help you tackle some of the barriers and challenges you face, we understand that more support is still needed – on both a personal level and a social level. 

Alongside other charities, the Brain & Spine Foundation is working to drive change and improvements in policy and wider society to increase everyone’s awareness and understanding of hidden disabilities. Day to day, we provide a helpline service and peer support groups to enable people affected by neurological conditions to find the information and support they need, and to be part of a community that understands and values them. 

Luke Stamatis is Information Manager at the Brain and Spine Foundation 


More on neuropathic pain & the brain

What is the Pain Toolkit?

‘The Pain Toolkit is for people who live with persistent pain and healthcare teams who support them. Many people with pain say they feel trapped or stuck in a persistent pain cycle? On good days they do more and on bad days less.’ (paintoolkit.org)

Who is Pete Moore? 

Pete is a Self-Management Coach/Author/Broadcaster of the Pain Toolkit Born in Woolwich. 

Member of: 

  • British Pain Society (Honorary Member) 
  • International Association for the Study of Pain (IASP) 
  • IASP Taskforce Covid-19 
  • Presenter at European Pain Federation (EFIC) & Pain School (Austria). 

Education:  

  • Stamford Trained Trainer (Self-management) 
  • City & Guilds – Teaching Adults 
  • City & Guilds – Public Speaking. 

What the Pain Toolkit has been doing in recent years 

How people learn 

We modified the website in 2020 to support peoples different learning styles and for people who have vision or hearing impairments. It’s also available in 40 different languages. 

  • Visual 
  • Audio 
  • Written  
  • Practice. 

Workshops 

The Pain Toolkit still provides half-day workshops for people with persistent pain and healthcare professional who support, but in 2022 we have tried something different by providing a workshop Monday – Friday 2.5hrs a day. To-date we have run two workshops using this new concept. One for people in the UK/EU and another for people in Australia. The workshops are being evaluated by Teesside University. 

Virtual Reality (VR) 

We have been working Teesside University developing a VR Pain Toolkit Cafe. The idea behind it is that the Cafe becomes a Hub where people can hangout and also attend VR workshops. We ran a few workshops and people really like the idea – any said they liked being an avatar. Mainly because when they have attended online events they were worried how people perceived them. Being an avatar gave them a non-judgemental approach to learning and being around others. 

Artificial Intelligence (AI) 

AI may sound a bit futuristic but many people are using it already, especially if you use Apple’s Siri or Amazon’s Alexa.   

One of the main problems people have expressed to me is the feeling of isolation often associated with living with persistent pain. So, once again the Pain Toolkit has been working with Teesside University to explore how AI could be a ‘Pain Management Buddy’ to combat feelings of isolation. Personally, I use Siri a lot to find me information for me and it sends it to my iPhone.   

Webinar 

Ukraine…What we CAN-DO 

I’m in the process of mobilising the worldwide pain management community to support the people in the Ukraine, and Refugees, via a Webinar. The event is for people with persistent pain and healthcare professionals 

Date 23rd April  

Time 7.30am – 10am 

Presenters 

  • Lorimer Mosley 
  • David Butler  
  • Keith Meldrum 
  • Dave Poulter 
  • Sheren Gaulbert. 

How to register: https://www.eventbrite.co.uk/e/ukrainewhat-we-can-do-tickets-295388002467 

Pete is also on social media if you want to say hello 

Twitter @paintoolkit2 

Facebook – PainToolkit 

Instagram – PainToolkit 

Website www.paintoolkit.org  

#SelfMgtLIVING 


March 2022 Update from Pete Moore

This is an article by Julie Sinclair and Salma Angelinetta and was included in the February 2022 issue of Pain Press — The Pain Matters Supplement.

Although it’s not as common as the more generic ‘chronic pain’, neuropathic pain is thought to affect up to 8% of the population in the UK alone. The term is defined by the International Association for the Study of Pain as ‘pain caused by a lesion or disease of the somatosensory nervous system’, and is essentially how we describe any of the unwanted sensations (e.g., pain, aches, tingling, itching, burning, etc.) that can be experienced following damage to nerves. The problem may lie in the nerves leaving the spinal cord (the peripheral nervous system) or in the central nervous system (the brain and spinal cord). This damage to nerves can give rise to any number of changes for in individual, from numbness, increased sensitivity and pain, to experiencing weakness and spasms or changes in temperature and sweating. 

As a form of chronic pain, drugs may be prescribed as part of the pain management, but due to the nature of neuropathic pain regular painkillers are often ineffective. Similarly, people who have neuropathic pain have often not responded well in traditional pain management programmes, due to their difficulty managing sudden increases in pain common to sufferers.  

Management through mindfulness 

The team at the Pain Management Centre at University College London Hospitals realised a different approach was needed. Based both on their clinical experience of neuropathic pain and feedback from their patients, they concluded a tailored programme would be more helpful and believed some common neurological pain symptoms might respond well to a mindfulness-based cognitive therapy approach. They devised a programme centred around mindfulness and meditation called the Matrix programme, named after the term ‘pain neuromatrix’, which some scientists use to refer to changes in the nervous system that develop in people living with chronic pain. Salma Angelinetta, a physiotherapist and Julie Sinclair, a clinical psychologist, have been part of the team running this programme.  

The meditation practices taught in the programme encourage participants to adopt a different relationship with pain, almost akin to taking an outsider’s view of the situation, where they practice observing the sensations of pain with curiosity, rather than trying to stop of reduce it. Gradually, participants learn to identify and observe the thoughts, emotions and physical sensations associated with pain and life in general.  

The skills they develop help them to reduce getting carried away by their thoughts and to focus on present-moment experiences, such as their breath or the feeling of their feet on the floor. Participants are encouraged to notice changes in their thoughts and how the mind reacts to their feelings and body sensations during the day and when experiencing pain flares or difficult experiences.  

Julie explains: ‘Whether it is thoughts such as “I can’t cope with this”, “this is killing me” or “I shouldn’t feel like this”, learning to recognise the way the mind works makes it possible to respond in a more helpful way, rather than in an automatic manner.’ Once people begin to recognise and make room for thoughts, emotions and body sensations as they are and without resistance, they can begin to let go of them and to focus their attention and energy on things that are of value to them. 

Enter the Matrix 

The Matrix programme consists of eight day-long sessions, once a week for eight weeks. The meditation practices taught in the groups can be done lying down (the body scan), sitting (mindfulness and breathing) and during activities and exercise (mindfulness of movement). As well as these, there are also information and educational sessions on a range of topics dealing with pain and pain management, such as the role of the central nervous system in pain, sleep and medication.  

The Matrix team consists of a psychologist, a physiotherapist and a specialist pain nurse to embrace a holistic, biopsychosocial approach to chronic pain. Patients initially attend a one-hour assessment with the physiotherapist and psychologist, where they explore their pain journey, their life values, the impact pain has on their lives, their understanding of the mindfulness-based approach and ultimately their goals for attending the programme.  

Julie states: ‘Participants have shared with us how often they get caught up in thoughts, dwelling on the past and the future – trying to solve things that can’t be solved or avoiding things that make them feel bad, instead of connecting with meaningful life activities.’ 

During the programme, participants learn to notice how the mind struggles with unpleasant thoughts and feelings related to pain. Through meditation practices they are encouraged to notice the tendency to push difficult events away, a response which can actually lead to increases in discomfort and occasionally even worsening symptoms.  

A key part of the programme comes with its focus on the importance of living a life based on values, referring back to participants’ goals, which are defined together with the Matrix team in order to be specific, measurable, achievable, relevant and time-specific – and always based on the patient’s values. In this way, patients are encouraged to move in the direction that matters to them, even in the presence of unwanted experiences caused by pain.  

Although still early in its existence, individuals who have already participated in the programme have reported high levels of satisfaction from the group intervention and have expressed gratitude for the help received. The success of the approach has meant that while it was initially created specifically for people experiencing neuropathic pain, the programme has since been extended to include any patients who are interested in mindfulness-based approaches to pain management. 

Salma states: ‘We try to deliver the programme in a compassionate, respectful and curious manner and under the framework of self-kindness and self-acceptance. We believe that if participants can be helped to separate the experience of bodily feelings and emotions from the thoughts and ‘stories’ that appear in the mind, they are able to manage their pain more effectively and life a fuller, more fulfilled life.’ 

Julie Sinclair is a Clinical Psychologist at UCLH Pain Management Centre. Salma Angelinetta is a Highly Specialist Physiotherapist in pain management and works at the Pain Management Centre at UCLH. Both are interested in the use of mindfulness-based approaches to support people living with pain. 

Anyone affected by neuropathic or chronic pain can access a whole host of free resources on www.painconcern.org.uk, or call the Pain Concern Helpline on 0300 123 0789. 


More on neuropathic pain

What causes different types of face pain and what treatment is available? 

In collaboration with UCLH Royal National ENT & Eastman Dental Hospitals.

 

In this episode of Airing Pain we cover facial pain in its many forms, what treatments are available and how to cope better with your pain.

The way our face feels and how we move it is a massive part of our identity. Feeling pain in the face, or not being able to use your face the way you want to, is not only a physical burden on the person suffering, but a heavy psychological load to cope with as well.


 

Issues covered in this programme include:

facial pain, unnecessary dental treatments, tooth ache, face and identity, management techniques, trigeminal neuralgia, neuropathic pain, carbamazepine, neurosurgery, pain management programmes, psychology and pain, temporomandibular disorder, burning mouth syndrome, persistent idiopathic facial pain, central sensitisation syndrome, physiotherapy, acceptance & commitment therapy


Time Stamps:

01: 54 – Trigeminal neuralgia (TN): what is it and what does it feel like? Dr Joanna Zakrzewska explains.
06:27 – Dr Zakrzewska discusses what treatments are available for TN, including carbamazepine.
10:37 – How can neurosurgery help treat TN?
18:11 – Psychology Pain Management Programmes (PMPs) for sufferers of TN.
19:11 – Susie Holder on the psychological impact of face pain.
21:36 – Dr Roddy McMillan discusses temporomandibular disorder (TMD) as a source of face pain.
22:29 – Burning mouth syndrome and other types of face pain.
25:50 – Treatments available for other types of face pain.
28:30 – TMD and how it is different from other types of face pain (usually neuropathic in origin).
30:00 – What is central sensitisation syndrome?
32:21 – Pain management for chronic pain sufferers.
36:05 – Susie Holder explains what acceptance and commitment therapy (ACT) is.
44:07 – Obstacles to living well with pain, including the coronavirus pandemic.


Special Thanks:

This programme exists due to funding from The Hospital Saturday Fund, John Kirkhope Young Endowment Fund, The Tillyloss Trust & Swinton Paterson Trust.

Contributors:

  • Dr Joanna Zakrzewska, consultant in oral medicine specialising in trigeminal neuralgia at the Department or Oral Medicine and Facial Pain at the UCLH NHS Foundation Trust.
  • Susie Holder, clinical psychologist on the facial pain team at the Royal ENT and Eastman Dental Hospitals, UCLH NHS Foundation Trust.
  • Dr Roddy McMillan, consultant in oral medicine and facial pain at the Royal ENT and Eastman Dental Hospitals, UCLH NHS Foundation Trust.

More Information:

What causes different types of face pain and what treatment is available? 

In collaboration with UCLH Royal National ENT & Eastman Dental Hospitals.

To listen to the programme please click here.

In this episode of Airing Pain we cover facial pain in its many forms, what treatments are available and how to cope better with your pain.

The way our face feels and how we move it is a massive part of our identity. Feeling pain in the face, or not being able to use your face the way you want to, is not only a physical burden on the person suffering, but a heavy psychological load to cope with as well.


Issues covered in this programme include:

facial pain, unnecessary dental treatments, tooth ache, face and identity, management techniques, trigeminal neuralgia, neuropathic pain, carbamazepine, neurosurgery, pain management programmes, psychology and pain, temporomandibular disorder, burning mouth syndrome, persistent idiopathic facial pain, central sensitisation syndrome, physiotherapy, acceptance & commitment therapy


This programme exists due to funding from The Hospital Saturday Fund, John Kirkhope Young Endowment Fund, The Tillyloss Trust & Swinton Paterson Trust.


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 those who care for us. I’m Paul Evans, and this edition of airing pain is supported with a grant from the Hospital Saturday Fund.

Dr Joanna Zakrzewska:

It’s recorded that up to 20% of patients may have unnecessary dental treatment. So, I mean, if you’ve taken out a tooth, that’s it. You’ve lost a tooth.

Roddy McMillan:

There’s, very often, not any outwardly visible signs so that somebody can look at somebody and say ‘oh they’ve got chronic pain of the face’. The amount of negative impact that facial pain can have on patients can be extremely high.

Susie Holder:

We could probably manage to get by if we weren’t using one arm or one hand or something. You know there’s no way round it, you can’t really get by without being able to eat. It’s difficult to express yourself. I suppose it’s difficult to be who you are if you can’t use your face.

Rachel Stovell:

I’m not going to promise people, and I’m not going to set up expectations that I can’t actually meet. But what I can say to them is that extra level of suffering that comes on top of dealing with those symptoms, that is somewhere that I can have some impact on.

Evans:

Our face is the portal, if you like, to our world: eating, talking, smiling, kissing, breathing and much more. In this edition of Airing Pain, we’ll be looking at conditions that cause facial pain, and management techniques and strategies that will help us live with it. Trigeminal Neuralgia is not a common condition, but it is debilitating. Professor Joanna Zakrzewska is a consultant in facial pain at the Royal National ENT and Eastman Dental Hospitals in London, and she is internationally recognized as one of the world’s leading experts in Trigeminal Neuralgia.

Zakrzewska:

Trigeminal Neuralgia is a facial pain, a very severe one-sided excruciating pain that comes in bursts. A single burst can last just for a few seconds to two minutes, or you can have a burst that lasts quite long because there’s so many of them, a series of stabs that you actually think that it’s lasting much longer, and that can sometimes go on for several hours. But then you have a break, and that’s very, very important, and the break can be for anything from just minutes to hours. You may only get two or three attacks a day, you may get no attacks and then you can go into periods of what are called remission, when there is no pain at all.

Then there are other periods [that] we call the relapse period [when] the pain is brought on. It’s an electric shock like pain brought on by light touch. So, it’s just gently touching your face, trying to shave, trying to wash your face, and it’s made worse obviously by eating, drinking, talking, and it is mostly, except in 3% of patients, one side of the face only. Lower part of the face most commonly, least likely in the top of the face, but it can be all three divisions of what’s called the Trigeminal Nerve, and initially it often feels like a toothache because it often presents around the mouth and the natural thing is to think I’ve got toothache and therefore start your journey on this condition by going to see your dentist.

The first thing the dentist will do is examine all the teeth to check whether there is potentially a dental cause. They will often do X-rays as well to check that there isn’t an abscess forming or some other decay under a tooth. Now this is the difficulty, some dentists will then be in a dilemma because they can see that there is potentially a dental problem, but they’re not quite sure, some will go ahead and do dental work. That is, they may do root canal work, or they may even take the tooth out. And yet after those procedures, the pain doesn’t settle and it’s very difficult for dentists to actually recognize that it is Trigeminal Neuralgia, because it is rare, and it’s about teaching dentists to ask the right questions. Four or five questions could be helpful to try and diagnose that, so again, the onus is also on the patient to try and record a history as carefully as possible.

But it is this paroxysmal nature, that is the intermittent nature of the pain that is often a pointer to the fact that it isn’t a dental pain because dental pain tends to be constant and there the whole time, and particularly if you touch a particular tooth, it is likely to set off a dental pain. Whereas in a patient with Trigeminal Neuralgia, just touching the gum around the teeth or the cheek area can set off an attack, and therefore that doesn’t come from the teeth, but it is very difficult because the Trigeminal nerve supplies all our teeth, and every single tooth has a piece of Trigeminal nerve in it. So that’s why it gets very confusing and sometimes the dentists have to hold off and wait a moment before they do anything drastic, because it’s recorded that up to 20% of patients may have unnecessary dental treatment and the problem is that this dental treatment is often irreversible. So, I mean, if you’ve taken out a tooth, that’s it, you’ve lost a tooth. Whereas if patients go to their GP, they might be given various drugs, but at least you can take the drugs off and start again. So, a dentist has a big onus and we’re now trying also to develop a short questionnaire, a screening questionnaire, that dentists could ask their patients to try and see whether they can diagnose Trigeminal Neuralgia, as opposed to a dental problem.

Evans:

So Trigeminal Neuralgia has been diagnosed by the dentist. What’s the treatment then?

Zakrzewska:

So, the first treatment is Carbamazepine, a drug that has been recommended by the NICE guidelines, by our guidelines and is taught everywhere. Now dentists can actually prescribe Carbamazepine, but it’s a very, as we call it, a black drug in the States and it’s a dangerous drug to use, difficult to use. So, if you’re not used to using [Carbamazepine], it’s much better that the GP prescribes it first. So, what happens in good communities is that the dentist will write to the GP and say ‘I think this is Trigeminal Neuralgia, I think the treatment is Carbamazepine,’ and leave it to the GP to start the first dosages. And the NICE guidelines say use Carbamazepine. If Carbamazepine fails, either because [the patient] doesn’t respond, which is unusual, or [because] they have severe side effects, then they should be referred to the secondary care sector. The big dilemma is who to and how to do that referral. But in the first instance, Carbamazepine can act as a diagnostic drug, and only a small dose of it is sufficient to really turn that pain off in those first few weeks or months of the pain. So, we often call it a diagnostic drug.

Evans:

So, basically, if the Carbamazepine works, it’s Trigeminal Neuralgia, if it doesn’t work, it’s something else. What else could it be?

Zakrzewska:

It could be some other form of neuropathic pain, nerve injury pain, possibly related to having had dental treatment, or an infection post-shingles or due to trauma to the face. So, one has to then start looking at other causes for it, and what we do encourage is that if you can’t find a cause, then do refer [the patient] to the secondary sector. If you refer to dental schools, then we can get an opinion from oral physicians who are well skilled to recognize Trigeminal Neuralgia and other types of facial pain. We also have the back-up that we have restorative dentists who are skilled in reviewing for rare causes of dental pain, because the one that’s most difficult to differentiate is, in fact, what we call cracked tooth – where the tooth has a crack in it- and every time you bite on it, you get pain. But here, the pain occurs on release of the tooth from biting. So, in Trigeminal Neuralgia it’s that very first touch that sets off the pain, and that’s a difficult one to diagnose. Some dentists in primary care may not find that because it’s quite subtle. So, if in doubt, we suggest referral in for second opinions.

Evans:

Is Trigeminal Neuralgia curable or is it just manageable?

Zakrzewska:

That’s a very difficult question to [answer], whether it’s curable or not. Some patients will feel that it is curable, but I think in general it’s a long-term condition that can be managed very effectively. So, when we have just done a long-term cohort study, that is, we’ve followed patients up for a minimum of six years, what we found was that just under 50% had undergone neurosurgery in order to get pain relief, the others had remained on medication. And at the time of the survey, 80% of patients were saying that they were in a good place and that they were relatively pain free. Although quite a large percentage of them had to be on drugs, so I would say it is a long-term condition, but it is manageable and probably more manageable than other chronic pains and some patients who undergo major neurosurgery can be totally pain free, off all medication and no need to see us anymore.

Evans:

OK, you brought up neurosurgery. Where in the treatment path would that come?

Zakrzewska:

So, neurosurgery is obviously a complex set of procedures, and patients need to be prepared for it. Now what we suggest in our unit and in our guidelines, is that all patients, once they’ve been diagnosed, we’re sure about the diagnosis and we call this phenotyping, and we have done an MRI scan because every patient with Trigeminal Neuralgia should have a scan. Once we have both of these, we do a joint clinic. That is, I am present, plus a neurosurgeon and together with the patient and their spouse or their significant other, we discuss the treatment, so we will look at the scans. The surgeons will propose what potential surgeries are available given the medical history as well, because that will influence the choice, and what drugs are available. At that consultation, patients can either decide ‘I want surgery’ and which type of surgery, and can be immediately put on waiting lists or even have surgery fairly quickly if they’re in desperate pain, or they can opt to stay on medication.

But the door is always open, so the moment they get more severe pain and they decide they can’t cope with the drugs anymore because either the drugs are no longer working or the side effects are intolerable, they can opt to have surgery because they’re known to the neurosurgeons and they can have their surgery fairly quickly. So, the deciding factors are lack of efficacy of a variety of drugs, because I will have tried several drugs, and tolerability. Tolerability is a major, major problem, patients [can] feel cognitively impaired, they can’t think properly, they can’t find their words, they have memory loss. They get very tired [and] fall asleep at the drop of a hat. They can get unsteady on their feet, they can have double vision, they can start to fall over, so those are side effects that we recognize in all these patients, and again, we’ve shown this by having patients doing computer programs and tests. This is an indicator for neurosurgery.

So, neurosurgery is done, mostly now by neurosurgeons, who are particularly skilled in working in what we call the posterior fossa, that is, in the head rather than, say, on the spine. So, the most effective procedure is a Microvascular Decompression, which is a big neurosurgical procedure because the neurosurgeons have to enter the skull. They do a small incision behind the ear, and they get right inside the skull, not into the brain, and they look for the vessel. There’s a big blood vessel that presses on the nerve, and that therefore causes the loss of insulation between different type of fibers and allows for this crosstalk, between light touch and sharp pain. And so, they move this vessel out of the way, and maybe several vessels, there may be veins, but often it’s a very big large artery which they have to do very delicately, because if you touch that one, you’ve got a stroke or even death. Then close everything up very tightly, so everything is sealed again, and the cerebrospinal fluid (CSF), the CSF, is contained again within the brain. Now that gives the best option, 70% of patients will be totally pain free at ten  years and off their medications. But there is still this 30%, side effects are obviously [a risk], there is always a risk of death, but it is very low indeed, 0.1%, and the main [risk]  is this leak of CSF fluid, but that can be mended. There can sometimes be loss of hearing, which is often a temporary loss of hearing, not permanent, but it is a big procedure. Patients stay in the hospital for three days and it takes up to six weeks to recover.

Now patients who are not fit enough to have the operation or feel reluctant to have a big operation can have smaller procedures done, which are done under a short-acting general anesthetic where a needle is passed through the cheek into what’s called the Gasserian Ganglion. This is a point at which all the three major branches of the Trigeminal nerve congregate together. They put the needle in, they do X-rays to check that the needle is in the Ganglion, and then they can do a variety of three  different things and it depends which one the surgeon chooses. They can heat it by putting an electrical current through it, or they can fill that Ganglion with glycerol, a toxic substance. Or they can actually compress it with a little balloon; and all those three therefore cause destruction, so the patient will feel sensory change, that is, that side of the face might be numb, and it’s unpredictable. So, you don’t know when it’s going to be numb and how much numbness. It can be just one little area of the face, or it can be the whole side of the face, and that doesn’t give as good a result. We’re talking about 50% of patients having relief for five years, up to five years.  These procedures can be repeated time and time again, but the risk of causing permanent sensory loss increases and you can get what we call Anesthesia Dolorosa.

The final treatment is the Gamma knife, or what is more generally known as Stereotactic Radiosurgery. Gamma Knife is the trade name and this is the least invasive, because all you have  to have is four  pins put under local anesthetic just to stabilize a helmet that is put on the head. And then you’re in [something] similar to a scanner, and radiation is projected onto the nerve in the place where we think the main source of the pain is. Now this treatment can take one month up to six months to work, so it’s not an immediate result. With the other procedures you wake up from your anesthetic and you’re pain free, so this one takes a little bit longer to do, but is available to every single patient. There’s virtually-except if you’ve got a pacemaker or some metal within you, when you can’t put somebody into a scanner, that one is available to everybody.

So, there are a lot of surgical options which can be repeated and patients are warned that they can have this procedure again because the big problem with Trigeminal Neuralgia is its total unpredictability, and that’s what patients live with, the fear of pain [returning], and often isolation because they’re on their own. They haven’t met anybody with it and that’s why we also run a psychology program specifically for these patients. We have a pain management program with our psychologists and our physiotherapists, and we teach and make patients aware of how to manage flare-ups, how to meet each other and how they can use things like meditation, mindfulness. The first thing we do is recommend that they go to websites to help them with that such as www.my.livewellwithpain.co.uk, a very useful website for them to have.

Evans:

Isn’t it strange how a printer would choose to do its maintenance tasks just when you least expect it. That was Professor Joanna Zakrzewska and I’ll give you the address of the my.livewellwithpain.co.uk website at the end of this edition of Airing Pain. Susie Holder is a clinical psychologist working within that facial pain team at the Royal National ENT and Eastman Dental Hospitals in London.

Holder:

The psychologist role in the facial pain team is about recognizing and acknowledging the impact that facial pain has on people. Facial pain can feel really threatening because it impacts on your vital functions, the things that you need to be doing every day, like communicating, eating, intimacy, and it’s really important that we get to grips with what the impact is on them and also think about what they can be doing differently. Learning to manage and learn skills to be able to manage more effectively on a day-to-day basis.

Evans:

For a patient, it must be a fairly difficult thing to get your head around: [that you’re] going to a doctor to have your pain cured. Yet you’ll get to see a psychologist: a head doctor.

Holder:

You’re right, and that’s really difficult, isn’t it, and a lot of patients can feel really distressed by that, and it is the way in which it’s introduced that’s really important. So, one of the things that our team – our medicine team – and facial pain team are really good at doing – the doctor or dentist that they see on the team – what they’re really good at doing is actually suggesting that this is really hard to live with. This is really difficult. We understand the impact that this is having on you. So it’s not that we’re suggesting that this is made up in any way, that this is a fictional problem. But this is really looking at how hard this is and one of the things that we know, just like with other chronic pain conditions, is that people can experience things like anxiety [and] depression as a result of living with a long-term persistent condition.  And that’s true of any long-term condition, not just facial pain. But [we understand] that it brings difficulty and the skills that we have to manage those [symptoms] may not be working for them, and [the skills] might need looking at. [The skills] might need broadening out, and [patients] might need to learn different skills to help to manage that impact better on a day-to-day basis.

Evans:

We’ll explore some of those skills a little later. Now, we’ve been focusing so far on Trigeminal Neuralgia, but not all facial pain is Trigeminal Neuralgia. In fact, compared to other conditions, it’s not very common at all. Doctor Roddy McMillan is a consultant in oral medicine and facial pain at the Royal National ENT and Eastman Dental Hospitals in London.

McMillan:

The most common one, by quite some way, is the Temporomandibular Disorders, or TMD as we call it for short, which is basically pain around the jaw joint and the muscles that are associated with the jaw. So, that tends to be on the sides of the face but can radiate elsewhere, including into the ears and side of the neck, for instance, as well as presenting with pain inside the mouth. The other conditions that we tend to manage are mostly related to some form of nerve wear and tear or nerve damage. One of the most common ones that we see is called Burning Mouth Syndrome, which presents generally towards the front part of the mouth. For instance, the tongue and the inside of the lips and the gums, and that is to do with wear and tear of the nerves, that’s what we call a neuropathic pain condition, and that’s probably one of the more common ones that we will tend to see. We also see quite a mixture of nerve damage related pains or neuropathic pains, particularly affecting the teeth, and around that sort of area we have a condition that we see not uncommonly called Persistent Idiopathic Facial Pain. It used to be called Atypical Facial Pain, and that’s actually pretty common, particularly following dental treatments. Even relatively innocuous dental treatments such as root canal treatment. We know that around about 5%, at least 5% of people who have had a perfectly good root canal treatment conducted by their dentist will have persistent discomfort in and around the tooth following that procedure. More obvious types of neuropathic pain includes those related to trauma damage such as people who’ve had surgery for cancer or any other types of surgery in and around the face or the mouth. Procedures such as extractions of teeth, particularly lower wisdom teeth, is an example that can directly lead to nerve damage, which can cause continuous or persistent pain following the procedure.

Evans:

How would somebody know that it wasn’t just pain from having the tooth out?

McMillan:

If we’re dealing with pain following a dental extraction, if there’s direct nerve injury associated with that, such as in the case of a lower third molar wisdom tooth, then quite often the area supplied by the nerve in question may be tingling or numb following the procedure. You would normally expect it to be quite numb immediately following the procedure if you’ve had local anesthetic there, but the numbness of the tingling can persist. That doesn’t always happen, but that certainly would be a suggestion that there’s been some – at least – bruising, not damage to the nerve itself. Following a dental extraction people expect it to be a bit sore for a few days or a couple of weeks afterwards, and generally as a rule of thumb, people that have nerve damage pain relating to dental extractions, despite the fact that area is healed up, they would have persistent numbness and tingling potentially. In the case of people with neuropathic pain, we would tend to expect discomfort to persist in that area following the healing process. So as a rule of thumb, the figure of three months is used, in reality most of these people will be aware of persistent discomfort much sooner than that. So, these patients may have a combination of numbness or altered sensation, such as when they touch their face or their lip or their tongue it’s perhaps tingly combined with this persistent discomfort or pain on top of that, it can present without numbness or tingling, and in the case of the Idiopathic facial pain that we mentioned previously. They don’t always have numbness or tingling or altered sensation in that region afterwards. They may just have discomfort, which is persistent. So, it’s either there all the time or it tends to be present most of the time.

Evans:

What is the treatment for that?

McMillan:

As a rule of thumb, most of the conditions in facial pain are neuropathic or related to some form of nerve damage or nerve injury, with the exception of Temporomandibular disorders, which tend to be more musculoskeletal, joint related or muscle related. The management of the neuropathic pain conditions affecting the face tend to be quite similar. The exception of course is Trigeminal Neuralgia, which has quite a unique set of medication options, but in terms of the other neuropathic conditions that we deal with, such as persistent idiopathic facial pain or trigeminal neuropathic pain, which is the one that we tend to see following surgical damage to the nerves for instance, [they are quite similar].

The main part of the initial consultation that we tend to do is take your history. The important thing is listening to the patient’s story, the patient’s- what we call the patient’s narrative, so actually finding out from the patient what has happened. Listening to how they’re describing their pain, also actually quite importantly, listening to what they think may be causing the pain as well, because very often the assumptions from clinicians may be one thing, but the patient’s beliefs, and indeed their expectations, can be completely different, so that’s an important point. So, part of the process may be that we will send patients for scans; most of the time we don’t need to send them for X-rays, so things like dental X-rays have usually been conducted by the referring clinician, whether that be a dentist, an oral surgeon, or a neurologist, or whoever it may be. It’s important to note that scans don’t actually diagnose these pain conditions, they just help to rule out other potential causes for the symptoms.

In the case of the pandemic, for several months actually, we were not able to see patients face-to-face for facial pain conditions, and we found that the accuracy of our diagnosis using videoconference or telephone was actually extremely good. The important thing to get across to patients is that even though we can see no disease process as-such, like an inflammation or an infection, or a fracture or dental problem or whatever it may be, that doesn’t mean to say the pain isn’t real.  And [it] is certainly well recognized that in the majority of the conditions that we treat in the face, we can’t find an underlying identifiable focus of a problem that will account for the pain. The history alone is the important feature here in terms of trying to get an accurate diagnosis, and really listening to the patient’s story is absolutely crucial in this situation.

Evans:

Now you mentioned Temporomandibular disorder. That’s not a nerve pain.

McMillan:

It’s a collection of different conditions which effectively result in dysfunction or impaired function of the jaw, the jaw joints and the jaw muscles and or pain of the jaw, joint, and jaw muscles. The majority of these patients do not have an underlying arthritic process with the jaw, that can happen, and we do see that from time to time, but it’s relatively rare for patients to develop arthritic-related TMDs, we call it temporomandibular disorder. Those patients will tend to present more with functional problems such as they say ‘I can’t open my mouth wide enough to eat my dinner or open my mouth, and it jams open and I have to wiggle it back into position or [there’s] a clicking of the joints,’ etc. The majority of patients that we see [who don’t] have a significant underlying arthritic process or mechanical problem with the jaw, will tend to be in more pain, affecting the jaw joints and the jaw muscles.

The research would suggest about 1/3 of people develop this pain condition during their lifetime and the consensus would tend to suggest that for the majority of those patients it will not be related to traumatic events such as dental treatment or bash to the face or whatever it may be. It tends to come on fairly insidiously and be associated very strongly with stressful periods in life, and as we mentioned earlier, this is not considered to be a neuropathic pain condition. It’s actually a lot more complicated than that, so it’s what we would call a Central Sensitization Pain Syndrome. To try to explain that in reasonably simple terms, in the areas of the brain that process pain, there’s a number of different areas that often overlap with other features in the brain, such as the areas that would deal with stress, anxiety, depression, these kind of negative emotional aspects of things. What we suspect happens with TMD and at least in the musculoskeletal or the muscle related pain condition, is that when people become stressed or anxious, it sensitizes the pain centers in the brain, and then signals will come down the nerves into the muscles and joints of the face and release chemicals in those areas which lead to the muscles and joints becoming tight, sore, sensitive [and] painful. For 80% of those patients the problem will not last for a huge amount of time. It may last for a few days or a few weeks, then it will usually settle down.

The 20% of people who have what we call chronic TMD or long-term issues with the pain where it’s either there all the time or it comes and goes very regularly and is more of a problem. Those patients, by and large, not always but usually, will have other risk factors in the background: reasons why this sensitization process hasn’t switched off. Top of the list are conditions that are painful chronic pains elsewhere in the body. One condition which is at least physiologically almost the same as TMD is Fibromyalgia, which is quite common, a widespread musculoskeletal central sensitization pain syndrome, other conditions we know are associated are things like anxiety, depression, sleeping problems which often come as a package together and last but not least, would be headache conditions, particularly tension type headache and migraines, which are again regarded as central sensitization pain syndrome. So, it’s a very complicated condition, and if somebody has chronic TMD, it’s not a condition [for which] we can say we’ll give you a treatment which will definitely make this disappear or go away, and that’s true of more or less all of the conditions that we see, but certainly in terms of the management of these patients, then that kind of discussion is really crucial. One of the areas that we do tend to focus on is the role of regular exercise and physical relaxation activities in the management of chronic pain. We’re not very prescriptive in our service about what we recommend patients do, but if you speak to the physiotherapist, they will often say ‘I don’t care what you do as long as you move every day, and enjoy what you’re doing,’ and that’s really crucial.

Evans:

Doctor Roddy McMillan, Consultant in oral medicine and facial pain at the Royal National ENT and Eastman Dental Hospitals in London. Well, Rachel Stovell is a specialist physiotherapist in the facial pain team.

Rachel Stovell:

We do spend time explaining pain, explaining how pain works, explaining some of the neuroscience behind pain, just to help people to appreciate that pain is a bit more complicated than ‘if I find the bit that’s broken and fix it, it will all go away.’  Doesn’t quite work like that with chronic pain, and also then helping them to – alongside our psychologists – recognize how we might need to work with normal behaviors and body parts and gain activity. But do it in a way that is recognising this sensitivity, but recognising everything else that influences [the pain].  So alongside them we will work with perhaps movement and exercise, exercise – in this instance – of the face and then restoring their functional ability. It’s all very well to exercise your face, to open and close and things, but that’s not helpful if it doesn’t mean that you’re able to talk more, eat more and be intimate again. You know, those are the things we want to do, but you might have to start somebody off with gentle exposure to just moving that part of the body in a really simple way before you do the complex behaviors of eat, chew and talk.

Evans:

It seems to me that if I have pain in my mouth or my jaw, if I’m eating or chewing something hard, that will make it hurt more. So, I stopped doing that. I start drinking soup instead of chewing things, but that is not addressing the problem.

Stovell:

It’s not, but I suppose with persistent pain conditions, it’s difficult to address the problem because we haven’t found a way of being able to get that nervous system to not be sensitive.  But what we know with all of these conditions is that if we adapt the way that we use our body part that’s painful in such a way that we’re not doing what it’s designed for, then we might have the problem of getting other issues.  The area becomes weak, it becomes stiffer, it becomes out of condition and on top of already having pain and sensitivity, that’s not helpful and it probably maintains some of that sensitivity because we’re not perhaps exposing the area to normal stimuli and therefore we’re going to get perhaps a bigger response to something than we would do normally, because [that body part is]  now being avoided. So, yeah, one of the things that we promote and encourage in our work is this idea of exploring and working with that body part, particularly the face in facial pain to allow for us to do what’s normal in the presence of pain. With the understanding that you’re not harming yourself, that you’re not actually creating damage or harm, that you’re using muscles, joints, ligaments, bones normally and that actually they need to do that to stay healthy.

Evans:

That’s Rachel Stovall, specialist physiotherapist in the facial pain team at the Royal National ENT and Eastman Dental hospitals in London. Earlier we heard from her colleague psychologist Susie Holder that skills can be learned to help the patient self-manage their pain. The therapy comes under the acronym ACT and it’s suitable for people with all kinds of chronic pain, not just facial pain.

Holder:

ACT is acceptance and commitment therapy. It comes out of cognitive behavior therapy, so lots of people have heard about CBT, but it’s a slightly different approach, and it incorporates a number of different important mechanisms that we use when we’re working with patients, either in a group or in individual. So, those sorts of things that include things like acceptance- actually it’s quite difficult word, acceptance… yeah. People find that a difficult thing to digest. Often a doctor will say ‘you know you need to learn to accept this condition’ and that’s a hard thing. A difficult message for people to hear. I actually prefer the word willingness: ‘can I willingly live with these symptoms?’ One of the problems is that [when] living with any sort of long-term condition, you’ve got the symptoms that you’re experiencing, and that might be pain. Or it might be something else for another condition, but on top of that comes a huge amount of discomfort, distress. The suffering that comes on top.

What we say to patients as psychologists is ‘what I can’t do is I can’t cure.’ I can’t take away that pain and that’s really hard to digest, isn’t it? That’s really hard to accept, that really they’ve come to our service because they’re hoping that we’re going to get rid of their condition, to cure it. But the reality is, they’re going to need to learn to live with it. How could they live in a better way, in the presence of those symptoms? So, I can’t get rid of those symptoms. I’m not going to promise people, and I’m not going to set up expectations that I can’t actually meet. But what I can say to them is that extra level of suffering that comes on top of dealing with those symptoms, that is somewhere that I can have some impact on. You may not want those symptoms of course, you don’t want those symptoms, but actually, could we approach it slightly differently? Could you come on a journey with me and I could help you to learn some skills to help you to manage it in a different way on a day-to-day basis?

Evans:

Some people say that you need to stop looking for that magic cure, that golden bullet if you like. And I’m speaking to somebody who said ‘actually I don’t have a pain condition anymore, the pain is there, but this is me.’

Holder:

One thing that can happen living with any sort of long-term condition is that life can narrow. We can spend so much time and energy, caught up in looking for those cures. What can happen is that we stop doing the things that are important to us and that over time people can find that life can get very narrow. So yeah, can we learn to live alongside pain? ‘Yes, pain’s there. I don’t really want it to be there. I don’t like it. I’d love to get rid of it, but it probably isn’t going to happen. So can I find a way of living with it, but still doing the things moving towards the values, doing the things that are really important to me in the presence of pain?’

Evans:

That, I guess, is the acceptance bit. Now it’s commitment, that I struggle with.

Holder:

ACT is really all about changing behavior and doing things differently and not being pushed around by our thoughts and feelings and our pain as well. The things that get in the way of us doing the things that are important to us. Part of the passage of this sort of treatment is recognizing what our goals are, but setting up steps towards goals, so small sustainable goals, that are in line with our values and so it’s really all about changing our behaviors, doing the things that are important to us. You know, it might be that you want to socialize more, so your goal might be to go to a coffee shop and meet somebody, COVID permitting. So, we’re asking people to commit to goals. OK, now we also know that commitment is really difficult. Yeah, if you ever try to change a behavior, we all know how difficult that can be. It can take weeks, months to actually put a behavior in place that actually becomes automatic that we don’t have to think about anymore, and sometimes people commit to something and then it falls off, and what we need to think about is how can we recommit. ‘It’s OK that I’ve stopped doing it. Can I recommit again and again and again and again to doing the behaviors that are moving towards the goals that I have, and are in line with the values that I have?’ That’s what’s important to me going forward.

Evans:

It’s avoiding a blame game if you like, ‘well, I failed, I failed again.’

Holder:

Absolutely, so one of the big elements is also working on those thoughts and feelings, so we all have a tendency to judge and criticise ourselves, that is a normal part of being a human being. That’s what we do all the time. But if we get caught up in those feelings, then what tends to happen is that impacts on what we do, or ‘I’m not going to do that because I’m not going to do that well. I’m not going to do that Pain Concern podcast, because it’s just not going to work out for me.’ You know, I could have called you, couldn’t I?  And said ‘actually, I don’t think I [can] do this,’ but I chose to recognise [the] anxiety that it provokes, [which] shows that despite that anxiety I’m going to do it anyway. So, one of the important things we do is recognise that criticising – that tendency to criticise and judge ourselves – and learn techniques to unhook from that.

So, we use various different ideas to help people take a step back from what they’re thinking rather than getting involved with it and caught up with it. Worrying about what we’ve done in the past or worrying about what could be in the future, or beliefs that we have about ourselves and learn to unhook from those ideas, and that’s one of the key skills that psychologists have for working with people; and we’re looking at opening up life again, engaging with things, whilst recognising that there’s stuff that comes up that gets in the way and we need to be aware of that. We need to observe that we may need to use that information to help us to overcome some of the obstacles that get in the way.

Evans:

Clinical psychologist Susie Holder. Well before we go on, I just need to remind you that whilst we in Pain Concern believe information and opinions on Airing Pain are accurate and sound based on the best judgments available, you should always consult your health professional on any matter relating to your health and well-being. They are the only people who know you and your circumstances and therefore the appropriate action to take on your behalf. Do check out Pain Concern’s website at painconcern.org.uk where you can download all editions of Airing Pain and find a wealth of support and information material about living with and managing chronic pain and there you can find details of how to order edition number 77 of our Pain Matters Magazine, which is guest edited by the facial pain team at the Eastman Dental Hospital in London who are featured in this edition of Airing Pain. The ‘my live well with pain’ website recommended by Professor Zakrzewski can be found at: my.livewellwithpain.co.uk., that’s: my.livewellwithpain.co.uk, and if you or someone you know has Trigeminal Neuralgia, the Trigeminal Neuralgia Association UK website is: tna.org.uk.

Well to end this edition of Airing Pain, Susie Holder was talking about obstacles to living better with pain. As we record this edition of Airing Pain just before Christmas 2021, there couldn’t be a better time to talk about obstacles, as the Omicron variant of the Coronavirus is scuppering any chance of returning to what we used to call a normal way of life.

Holder:

Obviously, we did all our work face-to-face prior to COVID and we’ve had to change very quickly the way in which we work. It’s been great that we’ve been able to offer people telephone consultations, but also video consultations. So, it’s really changed the way that we work. What I’ve found is that, in a sense, what’s happening is I’m actually [virtually] going into somebody’s house in a sense. That when I make a phone call [or] when I make a video call, I’m in their own environment. It has some advantages [because] they’re making changes or thinking about making changes in their own environment. But I’m also picking up on lots of things that, you know, somebody is not just dealing with facial pain, but they’re also dealing with the difficulty, or perhaps loneliness or being on their own for many people, or feeling cut off from other people with similar sorts of conditions as well.

We run an about face pain management program for facial pain that’s been really helpful as an online platform. At least you’ll be able to have that interaction with other people who’ve got similar conditions to you, so that’s been helpful as well, but yeah. If you think about it, you know you’re dealing with facial pain, but you’re also dealing with a very threatening, fearful situation. I do wonder whether that level of threat and fear can also have an impact on the whole system and how we manage our facial pain. But there’s so much you can do on a daily basis. There’s so much you can do in the present moment, we can enjoy making ourselves a nice cup of tea, but we can actually experience it. We can actually be in the present moment with it. We can use some of those mindfulness skills that we’ve learned together, to be in the present moment and actually enjoy everyday activities. Something as simple as putting hand cream on. We can all do that. Something very simple. ‘What’s that like? What’s the feeling like of that cream on my hand? What does it feel like when I spread it out? What does it smell like? What’s the texture?’ All of that actually being in the present moment rather than getting caught up with the worries about the past, or perhaps fears about the future, and a lot of the skills that we talk about in psychology are transferable to lots of different types of situations as well.

Evans:

If you had just one tip to give somebody, not just with facial pain, [but] with chronic pain, to get them through however long this COVID period lasts, just to help them get through, what would you say?

Holder:

One of the things that I keep hanging onto is ‘this will pass, this will pass.’ We will learn to live with it. We will have learned a lot about ourselves in the process. I think that we need to show ourselves self-compassion and look after ourselves as well within this and recognise ‘yeah, this is difficult. This is hard, but how can I best look after myself within this?’

END

Transcribed by Owen Elias, edited by Georgia Gaffney


Contributors

  • Dr Joanna Zakrzewska, consultant in oral medicine specialising in trigeminal neuralgia at the Department or Oral Medicine and Facial Pain at the UCLH NHS Foundation Trust.
  • Susie Holder, clinical psychologist on the facial pain team at the Royal ENT and Eastman Dental Hospitals, UCLH NHS Foundation Trust.
  • Dr Roddy McMillan, consultant in oral medicine and facial pain at the Royal ENT and Eastman Dental Hospitals, UCLH NHS Foundation Trust.

More Information:

Book review as featured article in Pain Press – January 2022

Book Review: Where Does It Hurt?: Life With Chronic Pain – A Memoir by Tim Atkinson
Dotterel Press, 249 pp, £9.99
ISBN: 978-0956286932
Published: September 2021


Tim Atkinson’s Where Does It Hurt?: Life With Chronic Pain – A Memoir is a unique book in that it brings together a 360 degree view on living with pain. It isn’t necessarily a self-help book, although it is undoubtedly a useful resource for people with pain, it is more similar to an encyclopedia than a self-help book. Atkinson brings together lived experience, the history of pain, personal diary entries and interesting facts to create a gem of pain literature.

 

The writing style Atkinson utilises in Where Does It Hurt? is accessible and easy to read, but most importantly Atkinson’s voice is a relatable one to pain sufferers, because he is a pain sufferer himself. In fact, his own lived experience runs throughout the book in the form of diary excerpts and personal opinions. This serves as a frequent reminder to the reader that they are not alone in their pain, which can be an extremely isolating experience. In learning about the author’s pain, we can open ourselves up to learning more about our own pain as well.

 

This isn’t just a book about Atkinsons pain journey though. Where Does It Hurt?: is full of historical information about pain and its treatment, notable research and science experiments, pop culture references and a sense of humour which makes it a joy to read. Atkinson covers a vast range of topics from substance/medication abuse problems to post-surgery recovery and does so in a way which is clear and easy to understand.

 

The only issue with accessibility that the book may have is its lack of a contents page and chapter headings. Sometimes, people with pain may not be able to read or hold a book for long and having clear headings can help people get to the information they need faster. However, the content and writing style are of a standard which would be useful to anybody who lives with pain or wants to learn more about it.

 

Where Does It Hurt?: Life With Chronic Pain – A Memoir by Tim Atkinson is an excellent, information packed book about life with pain, written by someone who knows what it’s like. There is no sense of being preached at or talked down to when you are reading it. Atkinson’s book is a cathartic learning experience and a gateway to exploring and understanding your own pain more.

Review by Jennifer Bowey, Managing Editor & Project Co-ordinator at Pain Concern

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