The Problem with Pain Scales

Throughout my Occupational Therapy training and my short but already meaningful career I’ve heard two key phrases in relation to OT.

‘Holistic’ and ‘Client centred’ .. even as students who struggled to explain exactly what being an OT involved we all knew that we had to practice holistically and be client centred [1].

So, we treat the whole person, taking into account mental and social factors and the environment, rather than just the symptoms of a disease. We do this placing the responsibility for the treatment process on the client, with the therapist taking a supportive role [2].

This is especially true when talking about persistent pain. Pain is a complex issue. The experience of living with pain is influenced by a wide range of biomedical, psychosocial and behavioural elements [3]. Properly assessing these is essential for good treatment outcomes [3].

Unfortunately not all of the available assessments do this.

“There are many types of and dimensions to physical pain. Placing a dot on one vector in a two-dimensional plane is not an effective tool with which to describe its complexity.” – Amy Marie Keller

Anyway, after qualifying and registering with the HCPC I took a path that not many new graduates do. I went straight into private practice.

For the last 3 (of the five) years I studied for my BSc (Hons) OT I had been forming a rough idea for this private practice. That using video-chat and social media could revolutionise the way therapies were delivered. A fair few therapists were already using ‘Tele-Therapies’ to overcome geographic issues but it always seemed to be a ‘last resort’. In my mind the benefits of working from home via video chat made the prospect of in-person-clinic-appointment the last resort option.

So, fast forward to a newly HCPC registered me with a website and blog. I needed to start bringing in people. ‘Luckily’ for me there are a seemingly endless supply of people with chronic conditions who would like help learning to manage their symptoms. I knew I could offer traditional therapies via video chat but was that enough for me?

I’ve always firmly believed that the most dangerous phrase in healthcare is this…

“We’ve always done it this way”

I went back to my own experiences as a patient.. what did I hate about the way things were done? What elements of traditional healthcare seemed to endlessly frustrate me? What had I seen complained about on twitter? What did the actual service-users say about traditional services?

Standardised assessments.

As a professional I know the value of these as an outcome measure but as a patient they irritated me no-end. Telling and re-telling my story, rating my anxiety, my pain and my fatigue on ever changing scales, charts and pictures. It’s all so frustrating. If I felt that way, did others?

“How do you rate your own pain on a scale that was probably thought up by someone who doesn’t suffer chronic pain and the results are similarly submitted to another person who doesn’t suffer chronic pain? Ratings of pain are personal to the patient, my 5 may be very different from another persons 5, some people also cope with stabbing pain easier that that constant dull ache, whereas stabbing pain really gets to me. The whole idea is too subjective when the ratings can be used “against” you depending on the context in which the results are submitted.” – Jay Sherwood (OT)

I started asking around. The vast majority of pain patients I spoke to found no value whatsoever in rating their pain from 1 to 10. In fact, it’s worse that that.. it’s often impossible to do and so subjective from minute to minute that most of the people I spoke to think it’s a total waste of time.

“It’s unhelpful. My pain level varies daily/hourly depending on various things. Also most people (even professionals) don’t understand, because I live at a 4/5 it doesn’t mean 9/10 is bare able to me. If i’m coming to you for help it’s because I’m on my last thread of strength. Mentally I’m about to lose my mind because of the pain I am in.” – Nicole Gore (MrsJeeby)

Given that they/we think it’s a total waste of time you can imagine how frustrating it is to have to do it at the start of every single referral. Sometimes, every single appointment.

Assessments of and around pain seem to pose particular problems. Discussing this recently has prompted a slight change in the direction of this post but sometimes tangents are beneficial.

At the start of my career I told myself I’d never ask anyone to rate their pain on a number scale. So far, I haven’t … and yet we’ve still managed to establish changes in pain levels as a result of our sessions.

The more I think, discuss and research the more I think I’ve narrowed down the problem. The severity of someones pain is not what we should be assessing. The severity of pain is so subjective, complicated and meaningless that it’s irrelevant. What we (as professionals) need to know is how a person is coping with pain. Severe pain that is manageable is less of an issue (occupationally speaking) than mild pain that’s causing huge disruption to a persons life. This is especially true for those with chronic and variable pain.

Speaking as a patient, the pain I seek help for is not my ‘worst’ pain it’s my disruptive pain. Pain that is new, or I haven’t learnt to manage yet. Pain that gets in the way of whatever it is i’m doing.

Severe pain during a day time activity might not need pain killers because distraction, pacing and adaptations do the job. Mild pain when you’re trying to sleep can make even the most hardcore pain warriors reach for the pills. The ‘pain-somnia’ is more disruptive, it’s more of an issues and harder to cope with regardless of the severity.

So we change it up, make it occupationally focussed (It’s what we’re supposed to do anyway as OTs). “How is your pain impacting you life” or “During your usual daily activity how often is pain a disruption”. These questions are much easier to answer and in my experience the answers are much more useful.

The most challenging and most often used assessment here is “can you rate your pain on a scale of 1 to 10” to this I often respond “No”.

“Rating scales are a great scale in some respects, but the problem is, pain is subjective. My 10 is completely different to other people’s 10. So what some would rate 10 would be a 5 or 6 for me. Professionals think I am okay when I rate my pain as a 5/6 when actually I am in an awful lot of pain…”  – Lucy Watts

The first most simple issue here is that ’10’ is often ‘the worst pain you can imagine’. This in itself poses issues.. for some people out there who’ve never had a serious injury, illness or accident the worse pain they can imagine is standing on a Lego brick bare-foot.

For those who’ve lived with severe and persistent pain, standing on a Lego brick is nothing more than a small but unpleasant blip on a life long journey.

I’ve never yet rated anything a ’10’ on the pain scale despite some serious injuries because I can always imagine something worse!

The second issue is that a ‘scale of 1 to 10’ doesn’t often come with an explanation. What does a ‘6’ out of 10 mean to you? Pretty bad? Not bad at all? barely worth mentioning?

Here’s the definition – “6 – Moderately strong pain that interferes with normal daily activities. Difficulty concentrating.” [4]

When you think what that actually means it’s pretty bad right? It’s having a measurable impact on your daily life. 6 out of 10 is bad.

This brings me nicely back to an earlier point. People with long-term pain really struggle with these and I’ll do my best to explain why. My pain doesn’t interfere with my daily life much at all, this not because it’s not painful but because I’ve adapted my life to suit my needs. If my legs hurt too much to walk I use a wheelchair. My ‘6’ pain doesn’t interfere with my daily activities because my daily activities are adapted to be pain friendly. This is the social model of disability in action. My life, my environments, meet my needs which improves my ability to function despite physical challenges.

If I tried to do ‘normal daily activities’ without the adaptations and strategies I rely on, my pain would be a 6 or above all the time.

“I was born in pain & my experience of pain is totally different to most people. I broke my leg in two places last year and I was told I obviously couldn’t feel it as I wasn’t screaming. I was in agony, obviously, but am able to cope with pain as I’m used to it. So my 10 is not most other people’s 10. It should be based on ability to cope, which explains for each individual.” Mik Scarlet

The more I think about it the more I feel that OT as a profession sometimes tries so hard to be a science that we lose sight of the core principles we swore to practice by. From a scientific (and sometimes political and financial) point of view I can see the benefits of completing these assessments [3] (and there are a lot of them I could choose to impliment) but the thought that always stops me is this… If I did that, knowing how my clients felt, I wouldn’t be client centred.

It’s a decision I’ve challenged myself on frequently. Every time I write reflections or articles (like this one). Whenever I get an email from an OT colleague wondering how things work at my end. Even speaking at conferences about what I do any why.

I challenged myself frequently while I wrote this, it sat in my ‘drafts’ folder for over a month before I finally finished it. I’m a realtively new graduate, I’ve never worked for the NHS and I’ve had barely any experience in traditional settings. What the heck do I know? Who am I to write articles on the core concepts of OT.

This answer is this. I’m the bridge. I’m the grey area. I am both patient and professional. I live and work in that great divide of ‘us and them’.  So, when I say something (occasionally) it’s heard by both sides.

Anyway, as always debate, conversation and questions are always welcome. Please share your thoughts with me.

JBOT

Reference List

1
Whalley Hammell KR. Client-centred occupational therapy: the importance of critical perspectives. Scandinavian Journal of Occupational Therapy. 2015;22:237–43. doi: 10.3109/11038128.20151004103
2
Law M, Baptiste S, Mills J. Client-Centred Practice: What does it Mean and Does it Make a Difference? Canadian Journal of Occupational Therapy. 1995;62:250–7. doi: 101177/000841749506200504
3
Dansie EJ, Turk DC. Assessment of patients with chronic pain. British Journal of Anaesthesia. 2013;111:19–25. doi: 101093/bja/aet124
4
What the Pain Scale Really Means. ProHealth.com. http://www.prohealth.com/library/showarticle.cfm?libid=20019 (accessed 7 Jul 2017). [Source]
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6 thoughts on “The Problem with Pain Scales

  1. Jo, Your articles are wonderful and your blog about your experience with EDS very helpful. The fact that you are both professional and patient is exactly why you should write stuff like this.

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