Benjamin Ellis: Chronic pain: working beyond our walls
Early in my Rheumatology career, I felt frustrated by my inability to meaningfully help patients with fibromyalgia. Patients felt this too, alongside anger that nothing was being (or could be) done. It’s un surprising though, given a model of specialist care typically detached from primary care and community services and ill-suited to the provision of ongoing support for people with complex, long-term conditions.
Around 2% of the population have fibromyalgia, living with severe chronic pain, fatigue and multiple somatic and cognitive symptoms, frequently associated with substantial distress and disability. Being a woman or from some minority ethnic groups increases the risk of fibromyalgia, as does deprivation and adverse childhood experiences.
People with fibromyalgia are often referred to rheumatology outpatients, but this may not be the best approach. The GIRFT Rheumatology Report recommended that care would be ‘better provided outside of hospital’. Recent NICE and RCP guidelines emphasised care based on trusted ongoing relationships, assessing and focusing people’s needs and preferences (‘person-centred care’), and a regularly reviewed plan to meet these needs agreed with the patient. Rather than focusing on specialist outpatient review, people with fibromyalgia need an approach rooted in primary (and community) care.
So it’s been exciting to test a new model of care for patients with high-impact musculoskeletal (MSK) pain, including fibromyalgia in North West London (NWL). We created what the Fuller Stocktake (1) subsequently called an Integrated Neighbourhood Team (INT), delivered by Imperial College Healthcare colleagues, the NWL ICS (Integrated Care System) Personalisation team and a large inner-city GP practice, advised by lay people with chronic pain.
From GP records we identified people with high-impact chronic pain, and offered them an initial meeting. During this (typically 30-minute) consultation (or ‘conversation’), people shared their ‘pain story’ which was received without interruption or judgement. People’s understanding of their condition was explored, and modern explanations given, helping people make meaningful links to experiences of current or early-life psychosocial distress/trauma. In parallel to offering immediate support in primary care, there was a review of symptoms, clinical examination findings, previous referrals and investigations to check if further diagnosis work was needed. This was delivered by a GP initially. We’re now exploring whether a practice pharmacist or physiotherapist can perform some of this role.
Patients typically chose to use these conversations to discuss changes they can make for themselves, their mental health and wellbeing, social care and community needs; medicines, referrals and scans rarely came up. This led to a plan tailored to the person’s stated needs and preferences. Sometimes this involved referrals to mental health services or social care. More often it was delivered by existing members of the PCN team: health and wellbeing coaches, social prescribing link workers, and pharmacists.
A multidisciplinary team structure fostered close and collaborative relationships between the PCN team and secondary care specialists (from rheumatology, physiotherapy, health psychology). We met online monthly to discuss complex cases, improve knowledge and confidence in supporting patients with chronic pain, and explore feelings about supporting people with complex needs, poor past experiences of healthcare, and frequently with experiences of trauma.
Patient feedback was positive, particularly about feeling heard, understood and cared for. People reported substantial overall improvement in health (Musculoskeletal Health Questionnaire, MSK-HQ). Activation scores rose markedly too, suggesting the intervention increased people’s confidence in managing their health and wellbeing, itself associated with reduced future reliance on health services.
Strikingly, when offered a personalised approach, people wanted support to understand their condition, improve their mental health, and access wider community and social support. Medicines, tests, or referrals to physical health specialists or physiotherapy were discussed less.
This work boosted the whole primary care team’s confidence and skills to care for people with fibromyalgia, including making and recording the diagnosis, understanding the role of the wider team in providing support, and shifting the emphasis away from medicines and towards addressing people’s self-identified needs, according to their preferences. This culture shift transformed work that previously created anxiety and dread into highly rewarding, fulfilling and meaningful activity.
Embracing personalised care in primary care can transform care for people with chronic musculoskeletal pain including fibromyalgia, benefiting the entire healthcare system and wider society. Others have explored this model for people with other complex chronic problems, though few have included fibromyalgia. By learning from one other and sharing these stories, we can create momentum for this to become usual good practice.
Through this work I’ve learnt a huge amount about how primary care works, and the alchemy that can happen when hospital-based specialists work with colleagues in primary care. For supporting people with long-term conditions, this has to include health and wellbeing coaches and social prescribers, but also social workers, mental health workers as well as community and voluntary organisations and peer support. By working together, we can redefine care for people with chronic pain, empowering the patients we support to lead healthier, more fulfilling lives.
We would particularly like to thank Kalwant Sahota and Antonia McGuire from the Personalised care team for their dedication to the project. We would also like to acknowledge Agnes Kocsis, Helen Dawson, our people with lived experience who work with us, and Imperial Health Charity, without which this project would not be possible.
Further resources