Selena Stellman (GP and GP lead for MSK and Personalised Care, NHS North West London Personalised Care team) & Benjamin Ellis (consultant rheumatologist and NHS North West London MSK Personalisation Lead)
We know the consultation. About chronic pain. In the middle of a packed duty list, wanting more analgesia, a new symptom to discuss. An ever-expanding list of coded co-morbidities. Seen all the specialists, discharged from every one.
Thinking about the appointment, our hearts sink. We know we won’t be able to solve the problems they’ll bring today. We sense they are lonely and want to talk, but we rush them through because the on the duty list are patients with problems we do know how to solve. We hurriedly assemble a plan – a different antidepressant, stronger opioids, another referral – out of desperation, not because we genuinely feel they’ll benefit or because they want it.
On the surface, the patient may accept the plan. They’re desperate, don’t know what else to do, and have little power to challenge us. Probably they leave the consultation despondent, even angry; and often we do too. Both patient and doctor sense each other’s hopelessness, everyone knowing (but no one saying) that today’s consultation won’t fix their problems.
Both know that the person needs to be seen (and cared for) as a whole human, not a collection of symptoms. Yes – one with chronic pain, but one who perhaps lives in damp, overcrowded accommodation, carries the imprint of childhood adversity, and lacks social support or community connection. Who lacks meaningful employment, with finances stretched thinly, and struggles to find purpose to a life mired in hopelessness and desperation. And now also a collection of confusing, overwhelming and seemingly unconnected symptoms affecting the bowels, bladders, thinking processes, along with headaches, palpitations and exhaustion.
People in this position need someone to listen and acknowledge that these symptoms are real, not all in their head. They need someone to explain their chronic pain and other symptoms, but also someone for everything else too. As well as medical care, people need time and emotional care. But how on earth can this be achieved in UK primary care in 2023? Is this really the role of a modern GP? Even if it was how can it now be in our over-stretched, fragmented, target-driven services?
People with chronic pain need personalised care…
People with chronic pain need personalised care – an approach offering patients choice and control over their mental and physical health, basing care on what matters to them personally, and focusing on individual strengths and needs. It is possible, and with a new approach all of us can integrate some of this into our practice.
In North-West London, we have tested a personalised care model to improve the care offered to patients with Fibromyalgia and high impact chronic pain. Our approach seems to be feasible, impactful and welcomed by both patients and doctors alike.1 This personalised care approach doesn’t necessarily require a lot more time (the most precious commodity in general practice), but it does require skills (that we can all develop), and processes (which we can all put in place). We made two key changes in our approach.
First, we now allow the patient control over their allotted time, inviting them to lead the way. Rather than delve into the diagnostic questions (“SOCRATES”), or reviewing treatments (“let’s see what you’ve tried before”), we can acknowledge the current symptoms (“I can see your pain and exhaustion is really bad at the moment”), lean forward and offer an invitation to go beyond this to share more of their whole selves with us:
“Is there anything else you’d like to talk about today?”
“What’s making your life particularly hard at the moment?”
“You’ve had pain a long time. Tell me about your journey with this.”
It’s OK and safe to simply listen with empathy, and show that we care.
It is mainly our anxieties that prevent these valuable conversations. We worry it will make things worse to unearth the stories that might be told. We worry that people may fall apart, and that we lack the time, skills or resources to put them back together. In fact, nothing they will say is new to the patient. Sharing is mainly difficult for us, not them. It’s OK and safe to simply listen with empathy, and show that we care. We’re concerned that after all this listening, the lack of a simple solution will worsen their sense of helplessness and despair, but actually by letting go of the myth that we can simply ‘fix’ their symptoms (and sharing that honestly with them) we can open a conversation about which of their needs can meaningfully be met, and how. Instead, acknowledge upfront there might not be time for them to tell you everything they want to in today’s consultation, and that things might come up that you yourself can’t help them with. But you’re there to listen, ten or fifteen minutes is a start, and they’ll feel heard.
By giving up control, we open ourselves to hear their pain story, fears, and worries. Many patients with complex chronic pain have a history of trauma, depression, abuse, and neglect. This might be the first time they have had a chance to tell their story. We now start to understand their wider circumstances, health beliefs and how these affect their behaviour, social and clinical interactions. Only then do we earn their trust to offer modern explanations about chronic pain to help them make sense of their pain: how it relates to their life experiences, how it’s connected with their other physical and mental health symptoms; and why all these symptoms are worse when their money is tight, or the domestic abuse is worse, or when they can’t sleep.
No single person has the time, expertise, knowledge, or emotional resilience to take it all on, but we each have a role.
Second we draw in the time, experience and resources of a multidisciplinary team (MDT) to offer support. Patients with chronic pain have needs that are too complex to be met by a person or profession. No single person has the time, expertise, knowledge, or emotional resilience to take it all on, but we each have a role. GPs can screen for treatable underlying causes for chronic pain, avoiding unnecessary and unhelpful investigations and referrals, and identifying and explaining their symptoms to the patient. This won’t be enough to meet the needs of many of these patients.
The expansion of new roles in primary care provides an opportunity to meet these needs meaningfully in the PCN. Social prescribing link workers (SPLWs) and health and wellbeing coaches (HWCs) can help patients with social, financial, and practical issues; facilitate peer support groups; and work with patients on setting and working towards individual goals. Like many of us, SPLW and HWCs are often unfamiliar with (and daunted by) chronic pain and multiple symptoms. Teamworking can help build skills and confidence to know that that somatic and cognitive symptoms do not need to be ‘solved’ by a GP before patients can start working meaningfully with them. Other PCN team members such as practice pharmacists, healthcare assistants and practice nurses also have potential to contribute positively to the care of these patients and could be involved in PCN MDT working to support people with chronic pain.
External support can be provided to the PCN team from secondary care colleagues, working as an ‘integrated neighbourhood team’. For us, this has been a consultant rheumatologist, health psychologist and specialist physiotherapist. Collaborating in this way can support the PCN team to hold risk about the need for further investigations and referrals, share learning, and provide a space to explore the emotional impact that can arise from this work. We met online every six weeks, but there could be ad hoc arrangements too.
When I started working this way, I wasn’t sure it would be possible. Do I have the skills to see such complex patients? Surely there isn’t the time? Would the patients be willing to engage? Would I just end up seeing the same patients again and again and become the “pain doctor”? However, I have seen first-hand that this approach works.
By giving patients permission and control to focus on wider health and wellbeing (rather than on ‘reducing pain’), and through team working within the PCN with support from specialist colleagues, the patients we’ve seen have had improvements in their chronic musculoskeletal and non-musculoskeletal symptoms, and improvements in their confidence and understanding of their condition. Patient feedback has been extremely positive, with many valuing having the time to talk about what matters to them, feeling listened to and having their pain taken seriously.
Importantly too, healthcare professionals (GPs and others in the MDT) found it rewarding. GPs described their perception of patients with complex chronic pain changing from being the heart-sink patients we dread, to being patients with a story, needs, hopes, and dreams which – with proper listening and MDT support – they can start to work towards. As one patient said, “it’s changed how I see myself, and now I have courage to live with the pain”.
References
- Stellman S, Ellis B, Dawson H, Kocsis A, Mundra J, Hill C, Sahota K, Douglas S. (2022) “Piloting a new model of personalised care for people with fibromyalgia in primary care with secondary care multidisciplinary support.” Musculoskeletal care. Musculoskeletal Care. 2022;1–10. http://doi.org/10.1002/msc.1708
Featured image by Manos Kolovouris on Unsplash
Thanks Selena and Benjamin- excellent article!
How one “sees” oneself is so important – and how one is “seen” by others, are central to living and coping with chronic pain. After hundreds of ‘treatments’ that failed to provide substantial relief, one can feel helpless and hopeless, as one gets cast off to yet another professional. One can easily slip into seeing oneself as a failure and often professional’s see you as a nuisance, when they can’t be helpful – you can feel like you’re doing it all wrong and making the pain worse. Having a “team” behind you who are not judgmental strengthens the courage to keep going!
🙏