Daniel Allen meets a paediatric physiotherapist treating chronic pain in young people
A nine-year-old boy has had bilateral leg pain for five months. The cause of the pain is unidentified but he can’t climb stairs, walk to school or join in PE lessons. He struggles with activities that come easily to his peers. His parents say he’s not the happy little boy he used to be.
He’s referred to a specialist team whose members are all experts in chronic pain in children and young people. When the team listens to the family’s story and begins to set goals with the boy, a couple of things stand out. First, he can swim without pain. Second, although he makes progress and soon feels he could be jumping or trampolining, he still has to crawl up stairs.
Rhiannon Joslin is one of two physiotherapists in that specialist team, the paediatric chronic pain service at Western Sussex Hospitals NHS Trust. A former gymnast and coach who qualified as a physio in 2002, Joslin describes hearing a presentation during a course called ‘Aching, not faking’ by psychologist Deborah Christie of University College Hospital. It changed her practice.
‘She and a colleague had written a paper about young people with persistent pain and that course was transformative for me,’ Joslin says. ‘It opened up a new way of treating young people with persistent pain problems using a solution-focused approach.’
Joslin was working in Southampton at the time but was becoming frustrated at the lack of progress she was seeing in some of her young musculoskeletal patients. ‘There were some I didn’t feel I was doing justice to and I was struggling to get certain patients better. I just felt I could be doing more.’
Even though the parent is on the journey with the young person, it’s like the young person is in the front of the roller coaster. They
have a different experience from their parents sitting at the back.
She began putting into practice the learning she had taken from the course, which explored how children and adolescents with persistent but unexplained pain might benefit from an approach that offered more than physical rehabilitation. The way her department treated patients changed completely as a result of the developments she introduced.
In a paper published in Clinical Child Psychology and Psychiatry, Professor Christie and co-author Angela Griffin discuss ‘bodily expression of emotional distress’ and the interplay between psychological factors and physical symptoms. But they also describe the cause of persistent pain in some children and young people as a ‘fossil stuck in time’ and say it may be unhelpful to try to unearth it or to give the underlying problem ‘too much oxygen’.
Instead, they argue in favour of acknowledging and validating difficulties but then focusing on what has gone well for the child, ‘even if it only lasted 30 seconds’. In their experience, the authors say, an emphasis on optimism, positive regard and respect can help effect quick and long-lasting change.
Joslin, meanwhile, had left Southampton and joined the team in West Sussex where she combines practice with study – a self-funded PhD – and university lecturing.
The team, comprised of two paediatric consultants, a consultant psychologist and a secretary, as well as the two physios, takes referrals from all over the county. Patients are all under 18 years old and commonly around 14. There are more girls than boys and most have had pain for around two years before they come to Joslin and her colleagues. Face-to-face appointments may be supplemented by email support (see ‘Pavni’s story’).
Each young person’s primary complaint is MSK pain, Joslin says, but headaches and abdominal pain are also common. ‘It’s unique, how each patient presents.’
Treatment begins with all the team’s clinicians meeting with the child and his or her family, which means they only have to tell their story once, Joslin says. ‘We spend most of that hour listening, going right back to when everything started, even asking the parents about birth history.’
She uses the analogy of a roller coaster to describe the stories told by families. There are ups and downs, and each person has a different view.
‘Even though the parent is on the journey with the young person, it’s like the young person is in the front of the roller coaster. They have a different experience from their parents sitting at the back.
‘And it’s not a straightforward journey, it’s not a slow progression to an end point. And that’s what we see clinically as well.’
Going on an adventure
For clinicians, the roller coaster analogy is a useful reminder that regardless of how detailed their assessment, they are only seeing part of the ride. ‘From a healthcare point of view, what I find is that although we try to imagine what it’s like to be on that roller coaster, we are actually on the ground looking up at it. We only see snapshots,’ says Joslin.
She adds: ‘One of the things I like about the roller coaster analogy, when we’re talking to people about getting well and back on track, it’s about going on a “meaningful adventure” with them, not just following a recipe.
‘And that’s the big difference about the way we work. Every journey out of persistent pain is about going on that meaningful adventure with the young person and their family rather than saying, “This is what gets people better – A plus B equals C”. It really doesn’t work like that.’
But this narrative approach requires the physiotherapist to start with a blank canvas, Joslin says.
‘When young people tell us their story, we may only pick out of it what’s important to us, what fits with our knowledge and beliefs.’
She cites research that refers to this as ‘professional ventriloquism’. Young people involved in the research felt that clinicians only took from their history what was important to them rather than what mattered to the young person. ‘They also felt we translated it back to them based on our beliefs and expectations, not their own,’ Joslin says.
So by looking exclusively through their professional lens, clinicians tend to pick things out of people’s stories that fit their own beliefs, experiences and expectations. Instead, suggests Joslin, they should focus on putting that perspective to one side ‘and truly listening to the experiences and expectations of the young person and family.’
Understanding the child’s experience
In the case of the boy with bilateral leg pain, the team first explored the family’s expectations, asking questions such as, ‘What would make today’s appointment useful for you?’The family simply wanted to know why, after numerous investigations, the boy was still in so much pain.
‘The other thing we did – and it’s important – is validate their story,’ says Joslin. There was acknowledgement of a very difficult few months and of the worry caused by both the pain and the inconclusive tests.
‘We also make it clear we’re familiar with these signs and symptoms,’ Joslin adds. ‘A lot of these young people and families feel like no one really knows the answers. We use their story to say, “This makes perfect sense to us. What you’re describing and these symptoms fit with the majority of patients we see”.’
By listening to the family’s narrative, and their beliefs, experiences and expectations, the foundation for treatment is established. At this point the team always talks about the neuroscience behind pain, using age-appropriate video clips, for example, to help children and young people understand how they can experience pain even when no tissue damage or disease is present.
When the family returns for a subsequent appointment, goals are set using the solution-focused approach. With the young boy, Joslin explains how he was asked to imagine a miracle happening that night which caused all his pain problems to disappear. What would he do when he woke up? Play football in the garden, the boy said. Go on a trampoline. Run up and down stairs.
‘We said, “If that was ten out of ten, on a scale of nought to ten where are you now? Are you at zero or have you made some improvement?”.’
The boy said he was already at five. It took him a long time but he could now walk to school. He still couldn’t manage PE but could do other things.
‘That gives us a conversation,’ Joslin says. ‘We then say, “Okay, what would you be doing at six on the scale? At seven?” And we go all the way up to ten.
‘The key thing is we do it on his framework, not ours. When we said what would you be doing at six on the scale, he said he’d be jumping. So this is a young lad who’s crawling up and down stairs and struggling to walk but the thing he feels he could do next is jump. After jumping, he said hopping. After hopping, so at number eight, he said he would be able to walk up stairs but would have to put two feet on every step and hang on to the rail.’
Making the connections
As Joslin says, biomechanically this makes no sense. If someone struggles to go up stairs, it is unlikely they would be able to jump.
‘But this is a prime example of what happens with us as physios – we see it from a very biomechanical point of view and not as a perceived threat. So for this boy, when he got his pain, stairs were the thing he associated with pain. The first sign he had was he couldn’t do stairs – it really hurt his legs. So unconsciously the brain had linked stairs and pain.’
- Griffin A, Christie D (2008) Taking the psycho out of psychosomatic: using systemic approaches in a paediatric setting for the treatment of adolescents with unexplained physical symptoms. Clinical Child Psychology and Psychiatry. 13, 4, 531-542.
- Hargrove T (2019) Playing with Movement: How to Explore the Many Dimensions of Physical Health and Performance. Better Movement
- Launer J (2018) Narrative-Based Practice in Health and Social Care: Conversations Inviting Change. Dr John Launer.
With swimming, by contrast, there was no such connection. ‘Being in a pool had a very low element of threat for him and wasn’t associated with pain,’ Joslin says. ‘Therefore, that sensitisation of the nervous system had turned down and he was able to swim. But in other contexts, like walking to school, there was a lot of pain, memories and negative experiences associated with those activities which turn the sensibility of pain right up.’
She adds: ‘Those kinds of things in a family’s story make sense to us.’
Thinking outside the box
Another example: a girl who, despite much physiotherapy, had been unable to bend her knee since a soft-tissue injury nine months earlier. Like the young boy, she had many negative thoughts associated with exercises and physio. Joslin’s team tried lots of different things but in the end it was a horse that proved key.
The girl was desperate to ride again so Joslin visited the girl at home. They lowered the stirrup on her horse’s saddle to accommodate her straight leg.
‘But because she was on her horse, and that was what she wanted to do, she started to bend her knee,’ Joslin says. ‘So her physio then was just riding her horse every day and before we knew it her knee was bending again.’
The trick, she says, is thinking innovatively, ‘completely outside the box’. The easy thing to do would have been to give the girl more exercises. ‘But she’d been trying that for nine months. So I have to include within my treatment the young person’s narrative and, with that, how they interact with the world, whether that’s through their horse, through a friend, through school. I have to try and find that.’
Joslin’s willingness to practise innovatively, to try things, is of course underpinned by her MSK knowledge and the skills she has developed during almost two decades in physiotherapy. But spontaneity and fun have also proved crucial in her team’s success.
The young boy with leg pain was eventually discharged, able to climb stairs, run, take part in sports day. And his parents had their happy son back. The origins of his pain – the ‘fossil stuck in time’ – remained undetermined. But with his pain problems behind him, perhaps the true cause is best left unexplored, without that ‘oxygen’ that Professor Christie describes.
Pavni was 16 when she was referred to the chronic pain team. She needed only three face-to-face appointments, with email contact then used to support her recovery. Her treatment followed the solution-focused approach used with all young people seen by the team. Here, Pavni describes the debilitating effect of her pain and how she was helped to progress.
‘I have been in pain for years. It wasn’t a small inflammation, or a scrape on the knee; it was an ongoing pain. Day after day, month after month, year after year. It never subsided. Normal day-to-day things became increasingly difficult. Walking up the stairs, walking to the kitchen, walking to and from lessons, walking in general. It was hard. No one took me seriously, my parents brushed it off. Five years, I was alone. Just me and my pain.
Finally, my parents decided to take me to the hospital, to see a doctor about this. More than 20 doctors’ appointments, three X-rays and an MRI scan later, I was diagnosed with a meagre snapping-hip syndrome. It seemed so simple, so why was I in so much pain? And to physiotherapy I went, regularly, for three years.
Now snapping hip syndrome should only take six months or even less to fix, so why were they so baffled and brought in many different physios to see me? My condition would start to get better and all of a sudden I’d be back to square one. A never-ending cycle.
It was frustrating because I was working so hard, doing everything right, but the flare-ups were a consistent re-occurrence.
I’d had gym block sessions four or more times, made wonderful friends. But each time, I was back, and they weren’t, getting better without me. I hadn’t done PE for three and half years. It was frustrating and saddening, watching all my friends have fun and I couldn’t.
In the midst of all, I had pushed myself to do my bronze Duke of Edinburgh award. It was hard but I really enjoyed it. It brought back some confidence. Until I had another flare-up, and another, and another.
So I was referred to see a pain team. After meeting with them, they concluded that I had chronic primary pain. I had been resigned to living with pain so long it was a relief to know what was wrong with me.
They helped me to understand the pain and believed that everything I was feeling was real. I was sent a few videos on chronic pain which really helped me understand it better. It also stimulated more interest in this sector and I found myself fascinated and researching more and more. I went to sessions with the physiotherapist and she helped me regain my confidence in myself and my legs. This, in turn, helped me to push myself physically, and reduce my fears. I found the pain did not increase whilst my abilities did.
Having people believe in me and push me encouraged me to do the same to myself. I’m a month out of rehab and have completely turned my life around. I now run, push myself more at circuit training, and am happier. The pain gets better, you have to learn to push past the demons and truly believe in yourself. It won’t last forever, you just have to trust yourself and try to do normal things. Almost like faking it till you make it.
The future is bright, but no one can fix this issue for you. You have to find the willpower to push through the pain. It’s hard, but the results are so, so fruitful.’
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