Before I start: I’ve got kind permission from Hannah Ensor of Stickman Communications to use a picture of her work in this post. Please take a look at her website, I’ve never found a better resource of useful tools and information relevant to LTC work than this site. This is a link to one of my favourite products. Another essential resource is the pain toolkit, which you’ll hopefully already be familiar with.
This has turned into a monster of a post, sorry not sorry; don’t feel like you have to read every single word but I hope there’s something useful for someone in here. I’ve included images of some of the resources that we have developed in my current team. I’ve removed the part of the images that would identify my team to protect my anonymity but these (apart from the 5 areas obviously!) are pieces of my work, written in my words, that I’d like to share. If you want to reproduce these then please get in touch with me through the contact form, I can send a copy with the service’s logo.
Sometimes I smile when I really shouldn’t
A few weeks ago I posted an introduction to the LTC expansion in IAPT from the low intensity perspective. This brief document provides a good and more official overview of the initiative. In the second post about the LTC expansion in IAPT I’m going to write about pain. Whatever physical health condition pathways an IAPT team is commissioned to work into, the symptoms of pain and fatigue are likely to be a prominent part of the work; as symptoms they can appear in most of the LTCs IAPT teams are trained to adapt their work around.
It’s slightly worrying but at least once a week I’ll catch myself walking around our office grinning so much that my cheeks hurt while I talk about subjects like chronic pain and cancer. I do not delight in suffering, I’m just excited by what low intensity interventions has been able to achieve in relieving it. When life feels unpredictable, uncontrollable and uncertain, straightforward and practical ideas that are delivered with skill, empathy and patience seem to work really well.
I could write a whole post for every paragraph that’s here today; there’s so much that could be said about pain, but for this post I’m going to hit the highlights of what I’ve learned while working in an Musculo-Skeletal (MSK)/Pain pathway. As always, I’d really like to hear what you think! This is very much just a reflection of my experience, it’d be fascinating to hear what’s happening in other places.
Being human hurts
We’ve all been in pain. It’s a guaranteed shared experience. You live in a human body; it will hurt you. Most of that pain is short-lived; a few excruciating moments with a stubbed toe, a few (pretty grim) days with a toothache, crippling period cramps on a cycle, a few weeks while a broken bone mends, and so on. For most of us pain will come and go. For a few million people in the UK pain can persist after any initial infection or damage in the body has healed. Some studies https://bmjopen.bmj.com/content/6/6/e010364 suggest that up to half of the UK population are affected by long term (or chronic) pain, where pain persists for longer than three months. For some people that pain is crippling and affects how able they are to live their day to day lives.
It was tough to decide what to include in this post, pain is a huge subject and most other people who write about it are better informed than I am. So I’m going to stick strictly to Low Intensity interventions and what I’ve learned about adapting and offering them to people who live with persistent pain.
What’s IAPT got to do with it?
Most (probably all) people who live with long term pain want the pain to be gone. Countless people have come to my clinic and asked for an MRI scan or pain medication. They want to know for certain what has changed inside their body to cause the pain, and they want those changes to be corrected so that the pain will go away. If that can’t be done then they want a medication that will mask the pain and let life go back to normal. We always recommend that our patients should go down the medical route before we try IAPT; if there is a solution for the pain available then yes of course, do that. But in so many cases medical science just isn’t up to the job of explaining why the pain is present, let alone treating it. That’s a difficult transition for the patient to make, it doesn’t fit with their experience or expectations, it’s frustrating and frightening. With only vague words offered by medical professionals it’s difficult for them to explain to their family and friends why the pain isn’t getting better.
This experience then leads to changes in their relationships and social circumstances. Life becomes more uncertain when pain is present, and the anticipation of pain evokes fear; worry is rife (and the worry causes muscle tension which can affect how much and how severely pain is experienced). Some people become afraid of movement, or receive unhelpful care or advice and start to restrict how much and what types of activity they do in the false hope that excessive rest will relieve or cure pain (we call this the ‘Take it Easy Trap’). Others fall into the boom/bust cycle and do too much on the days when the pain is less severe, and suffer the depressing consequences of payback pain later. Finances, hobbies, occupation, identity, sleep, appetite are all affected. There isn’t an area of life that is left untouched.
That’s where IAPT comes in. There’s a huge list of problems caused by pain, any of which could be enough to trigger depression and anxiety, which in turn make self-management of pain more difficult. We can acknowledge the whole experience and provide a way to make sense of it, and suggest simple, practical tools that might make some difference, even if we can’t cure the pain.
Lets talk about drift
Honestly, there’s no evidence base for low intensity LTC work. LITs (Low Intensity Therapists) have ‘evidence based practice’ hammered into them from the first day of training; ‘drift’ from evidence based practice is the worst imaginable monster in our working life. Stepping into LTC work where we have to do things a bit differently can be anxiety provoking. A couple of years ago I watched the clinical psychologists who supported our developments scratching their heads about this for weeks. Eventually they threw their hands up and decided that we’ve got an evidence base for the treatment of depression and anxiety, we’ve just got to make sure that any additions and adaptations we make for physical health can be justified and aren’t too wild (that’s a paraphrase). As we’ve gone on we’ve made sure that we don’t drift from the core low intensity skills and interventions, they stay very solid; what we have done is start to expand the definition of what is included in low intensity interventions. Just a tiny bit. This makes LTC work interesting for LITs who might be getting tired of the repetition of LI work in normal IAPT; the chance to build and expand our skill set and experiment with different ideas and ways of working – as well as the opportunity to work closely with other teams and professions – is great for retention.
NaGs Top Tips
- Getting started: assessment and engagement takes longer and for Pete’s sake, start with the body
We figured out very early in our LTC work that having one assessment appointment and getting straight on with treatment didn’t work. Most people who came to us were concerned with their physical symptoms and had been sent to us as a last resort. We learned to take the time to acknowledge the importance of the physical symptoms and the impact they have on every area of life. Only then did we explore the psychological effects and start to talk about the link between the psychological and physical as a way to describe why IAPT might have been recommended. Formulation and goal setting sometimes have to wait for a second appointment, after someone has had time to think about why a psychological intervention might make a difference to the thing that matters most to them. There’s more information to gather and the picture is often much more complex so don’t rush.
Years ago, before we started any LTC work, I had a moment of panic in a one-to-one session when I was working with an older adult who was in so much pain that she declined to sit down during our appointments. I began slowly, checking that she saw some value in seeing IAPT, and wasn’t just there because she had been sent. We began some initial psycho education to help her to understand how the LI approach worked. I was filling in a five areas model as I usually do – starting by acknowledging context and triggers, going on to cognition and then the effect of these on the body and emotion. The only physical symptoms that she could identify was pain. She looked at the form that we were filling in – we had just drawn a line from the ‘thoughts’ box to the ‘physical’ box – and said ‘it looks like you’re saying it’s all in my head.’ That was a bad moment, think quick NaG or she’ll get really angry and you’ll lose her!
I put the sheet of paper aside and pulled out a fresh blank sheet. ‘With this way of making sense of things it doesn’t really matter where we start, it’s more about seeing how everything joins up. If we start with your pain and see where that goes would that be OK?’
I started again, putting the body at the top of the page and writing ‘pain’ underneath the heading. ‘So when your pain is at it’s worst what tends to go through your head?’
‘I feel like I can’t cope, this is all that I’ve got to look forwards to, I’m useless and everyone must be sick of me by now.’ … That lady didn’t reach recovery on the PHQ-9 and GAD-7 while she was with IAPT, but we did a really effective bit of BA and she knit a cardigan for her grandson before we finished our appointments.
The angry pain patient is well known, you could even say infamous. Everyone who has run one of our Pain psychoeducation courses has commented on how present anger is in the room. If you think about it this makes a lot of sense, there are a lot of things going on that could present as anger:
- No one deserves to live with chronic pain, it’s not fair, there’s no justice in it, it shouldn’t be happening. Where anger pushes you to change something, it might not be possible to change the pain and there is so much frustration in that.
- The people we have seen on our pain courses often live in fear of the pain, and are generally anxious about managing day to day activities. That fear and anxiety sometimes present as anger and irritability.
- Everything is harder than it should be, and that’s tiring.
- We also see anger masking a deep sense of loss. Many people who live with pain are grieving for their health and the life that they can’t live anymore. They can no longer present themselves to the world in a way that is congruent with who they feel that they are, so they lose their self-identity too. Who they are as a parent, friend, worker are lost. Many people don’t recognise the grief for what it is, they think grief is for when someone has died.
- Many people feel let down by the health service. Communication might not have been brilliant, their hopes and expectations have been disappointed, it seems like no one is helping them and they’ve been thrown on the scrap heap.
Loads can be going on, but for the LIT it can feel like you’re managing a room full of people who hate your guts.
My best advice is to be patient, don’t get riled, don’t take it personally; the anger usually had nothing to do with you and what you’re doing. Provide good education and don’t be scared to use some gentle shared humour (but know your crowd!). Being around anger and managing your own reaction to that is very tiring, make sure you plan some proper rest and decompress time after working with someone around pain.
Practical adaptations are pretty straightforward
- Make sure seating is as comfortable as possible (within the NHS budget this is tricky).
- Make sitting optional, be prepared for the patient to stand or sit and to change position as necessary. Don’t let this throw you off.
- Always demonstrate pacing breaks in session. Stop regularly by the clock and contract for what you will do during pacing breaks (stretch, breathing exercise, just a couple of seconds to stop concentrating and look out of the window etc). Encourage regular gentle movement. This might mean offering longer sessions or the patient might prefer to have shorter sessions, but more of them.
Low Intensity expansions in pain
How has working with chronic pain pushed the envelope of what we include in Low Intensity work?
Pacing is the big new intervention; it’s absolutely essential for all LTC work. We never start BA, Graded Exposure or anything else before pacing has been covered. Pacing is going to get its own post in 2020.
Relaxation takes on a big role in pain. This isn’t new but we have expanded how much of a part it plays in our work. We’ve been lucky to work alongside some experienced clinical psychologists and an enhanced role physiotherapist to develop our LI course and materials. They all stress the importance of relaxation and diaphragmatic breathing. We demonstrate relaxation (NOT progressive muscle relaxation in chronic pain – anything but that) in session, and provide resources to support practice at home. As well as being good for pain management and helpful in anxiety work relaxation feels nice, people like it and it makes them want to come back to the next session.
Relationships and communication is huge. Again, this isn’t new material but it has taken on more importance in this work. After relaxation this is our most commented on material. This includes acknowledging that pain changes how we relate to other people, and how they relate to us. The frustrations of needing care, or the frustrations of care not being offered. It includes making the most of healthcare appointments, talking to people about what help you need, planning for flare ups with your family and friends. We look at how pain might affect communication styles and some basic assertiveness skills. This material isn’t usually covered in IAPT training, we just happened to have a good collection of material from an old intervention that we adapted, and it’s been very valuable.
Work with physical health specialists if you can
Setting up integration with other services, teams and NHS trusts is a huge job of work that often spans years. I’ve had emails from people around the country describing how they made some progress with this when funding for IAPT LTC was first released but sustaining it has been difficult. It really is worth persisting though. Being a Lit in IAPT who is running an intervention that is pitched towards people with physical health symptoms is bloody scary. What if we give advice that does harm? Having links with physical health specialists who appreciate the value of psychological input makes all of the difference. If you can email a query to someone who can interpret test results, make sense of the abbreviations in medical notes, who’d got existing relationships with the consultant… it’s invaluable. It isn’t always possible but it should be a priority.
The Third Wave; maybe we need a Tsunami?
Mindfulness based interventions are all the rage in CBT land at the moment. Acceptance and Commitment Therapy, Compassion Focussed Therapy, Mindfulness Based Cognitive Therapy and so on. These haven’t really expanded in most IAPT services yet, and definitely not in Step 2 – we aren’t commissioned for it. I heard a senior manager say very recently that ‘Compassion focussed therapy has got no place in IAPT’ even when they acknowledged that it would be the modality they would prefer to practice as a therapist.
Working in the area of Long Term Conditions is very difficult without adopting a few of the key principles from this wave of ideas. Think about it; many patients are in patterns of comparing the present to the past, before the unwanted physical symptoms occurred; or they focus on resentment and rejection of the symptoms and use every scrap of concentration and energy on the effort to eliminate them, even when that isn’t possible. These patterns are very understandable and natural. But if this is your focus then the suggestion that instead of trying to get rid of the pain you could use that effort to learn how to pace… well, you might not be very open to the idea. Or you might resent the suggestion, feel that no one is helping you and walk away from the service that isn’t helping you to get the result that you want.
Remember, most people with long term pain have been told to ‘live with it’ by someone at least once. Least. Helpful. Instruction. Ever. As a bare minimum I’ve found it helpful to have a gentle and questioning conversation that explores the value and effect of resisting the pain, recognising that this might contribute to distress. It’s possible to gently query if it would be possible to try an experiment of letting the pain be, and using the energy that you save when you stop resisting to try ideas like relaxation and pacing.
In my service we don’t base any Step 2 interventions on mindfulness, acceptance or self-compassion but we have developed introductory scripts that are designed to introduce an attitude of letting be and kindness as an antidote to shame. Anecdotally I have heard about some services running Step 2 ACT courses for pain and other LTC with wildly successful recovery rates. Officially that’s frowned on; a few months ago someone told me ‘stick to the evidence base or the wheels fall off’. I’ll admit that for many services there would be complications with commissioning if we started to make things up as we go along, but we are crying out for some kind of framework that would allow IAPT services the flexibility to do some careful controlled trials with interventions that have got a good chance of success, even if the randomised controlled trials haven’t been funded yet. We need a way to start doing research as part of our practice, urgently.
A note about the blog
Anyone who’s been following the blog will know that this post has been delayed by a few weeks while I’ve been unwell. I’ve still got post viral fatigue so I’ve decided that this will be the last blog post of 2019. I’m going to spend the next few weeks resting up and getting ahead of myself for next year. There is a collaborative post and another guest post in the works, as well as about half a dozen other topics I’d like to write about on my own.
As always, if there is anything that you’d like to write about Low Intensity work and would like it on this site then please get in touch. You can use the contact form to send me an email or reach me on twitter @notapwpguru. I would be genuinely thrilled if this site could reflect a variety of low intensity experience and voices.Your visits to the site, comments, contact on Twitter have been brilliant and encouraging this year; thank you so much for giving me the boost I needed to create this site and finally start talking about the inside view on what we do. Can’t wait to get going again in 2020!