Polypharmacy prescribing guidance - draft: consultation

22. Appendix J: Inequalities in chronic pain experiences and care – awareness, actions, responses

Introduction to issues - inequalities in chronic pain and care

Scotland has high levels of health inequalities that have increased over the last decade and contribute to poor health outcomes compared with other European countries,91^,[366] with poorer areas recently experiencing worsening health. Chronic pain prevalence is predicted to increase in coming years, with the disease burden continuing to disproportionately fall on socioeconomically deprived groups.[367] It is therefore incumbent on all working in healthcare to take action towards the collective reduction of health inequalities. It is important to understand the implications of health inequalities as the ‘unjust and avoidable differences in people’s health across the population and between specific population groups’,92 and to outline ways in which chronic pain experiences and care are experienced in unjust and avoidable ways, and what we can do about it within healthcare. Although the main drivers of inequalities in health outcomes lie outwith the health service, we can still play a role in mitigation of health inequalities, particularly in terms of access and delivery of care, both within healthcare encounters, and also in delivery of our services.

The causes of health inequalities can be framed as upstream drivers such as access to housing, education, social security, leading to downstream effects on the individual’s behaviours and biology. [368]^{, [369]} Inequalities of ‘what’ may be understood as differences between groups in health outcomes such as onset of illness and death, and the experience and prevalence of the condition, and also healthcare inequalities in quality, access and uptake of care. [370] While chronic pain is not recognised as a main driver of deaths it may be an early feature in presentations of multiple long-term conditions (MLTCs);[371]^,[372] can be a factor in why people take medications that can become problematic including drug related deaths,[373]^,[374] and can have a negative impact on the behaviours and conditions that people with MLTCs need to be healthy. [375]

Chronic pain is experienced with higher prevalence among socially, economically and historically marginalised groups, and multiple factors are involved in development, maintenance and exacerbation of these inequalities.[376]^{, [377]} Recent survey data from Scotland shows prevalence of chronic pain among adults is higher in the most deprived Scottish Index of Multiple Deprivation (SIMD) decile (50%), compared with the least deprived (29%).[378] A recent Public Health England report found that Black people experienced 10% higher prevalence of chronic pain[379] (this should be understood as due to being racially minoritised, rather than any inherent biological/genetic factors), and women are more likely to experience chronic pain than men.[380]^,[381] An intersectional appreciation here is important because these factors may overlap.377 Inequalities can also apply to groups of people with protected characteristics (e.g. disabled groups) and specific ‘inclusion health and vulnerable’ groups (e.g. people experiencing homelessness, sex workers and Gypsy Roma travellers).370

Psychosocial factors play an important role in the development and maintenance of chronic pain. There is a complex relationship between pain and distress, with the presence of distress associated with higher disability in people experiencing chronic pain, and higher likelihood of acute pain developing into chronic pain. [382]^,[383] Multiple psychosocial factors may influence distress levels and ways of coping with pain - some psychosocial factors are specific to pain such as ‘fear avoidance’,382 and some more generally applied to health, such as trauma.[384] Poverty and experiences of discrimination may lead to distress, and mental health conditions are also experienced unequally.[385]^,91 The process of making sense of the painful condition (as much as this is possible) can bring challenges and distress throughout the journey, and involves capacity to navigate care, utilise health information and implement management.[386]^{, [387], [388]}The ease with which it is possible to navigate and use our health systems will influence the distress and care experienced by our patients.

Severe chronic pain in particular brings significant socioeconomic implications for the individual with less capacity to carry out work, and reliance on social security which can itself bring distress.[389]^,[390] Work can include both paid and unpaid caring and household work, and also the work of living with chronic illness. [391]^{, [392]} People with chronic pain often live with other long-term and mental health conditions (including the impact of trauma), that also occur more often among those ascribed lower socioeconomic status.91 Condition management work can include any treatment advice including implementation of healthy behaviours, coordinating care, emotional management work, obtaining and taking medications.391^,392 The ‘work’ of managing both the symptoms of pain and the chronic pain condition is influenced by the varying demands of the work itself (e.g. fluctuating pain severity, ease of access to care) and the resources and capacities to meet those demands, which are shaped by experiences of poverty and inequalities.375^,387^,[393],[394]

In terms of access to care, the inverse care law affects access to general practice in Scotland,[395] and also affects pain management services,[396]^,[397] meaning that the greater need in areas of deprivation is not reflected in care provision. Groups ascribed lower socioeconomic status may be less likely to be perceived (or perceive themselves) as a candidate for a specialist service, [398] and may experience inequalities on waiting lists due to multiple reasons including difficulty taking time off work and travelling to services. [399] All these factors can lead to inequitable experiences of recovery from episodes of pain, living with chronic pain, and the degree of functioning, quality of life and adaption that is possible for individuals with long-term pain. Our services and how we deliver care play an important role.

What can we do to promote equity in healthcare delivery/ pain management?

While the chronic pain literature covers risk factors for chronic pain that can lead to inequities and a range of guidelines on interventions, there is little evidence within the field to support specific actions to promote equity. In making recommendations, we therefore use emerging evidence from the public health, generalist, chronic illness and musculoskeletal fields. In this section, we draw attention to literature sources, rather than give a comprehensive overview which is outwith the scope of the section. Recent evidence syntheses can inform action towards equity in pain care and include:

• Arthritis and Musculoskeletal Alliance (2024) Act Now: Musculoskeletal Health Inequalities and Deprivation ^[400]
• Gkiouleka et al.: Reducing health inequalities through general practice: a realist review and action framework – they promote five principles of equitable general practice: that care is connected, flexible, intersectional, inclusive and community-centred. ^[401]
• The ‘Fair Steps’ study (combined with the above review) in the ‘building equitable primary care toolkit’

Promoting health equity can be approached on a spectrum of strategies or interventions that range from targeting individuals to those that target populations and systems, and within this spectrum there is an approach of promoting ways of delivering care that may disproportionately benefit marginalised groups.401 There is concern from literature focused on health equity that reliance solely on lifestyle management approaches may actually increase health inequalities.368^,91 Implementation of system-wide responses at the service/practice level may be more likely to mitigate equity over sole focus on individual responses. The evidence reviews outlined have areas of overlap and in putting together the following section, we focused on some of the key findings, (and included wider literature areas) that could be adapted for pain care, including sections on health literacy and trauma-informed approaches – both literature fields that are particularly relevant to pain care, and could disproportionately benefit marginalised groups.

Education and awareness

Individual healthcare professionals (HCPs) can improve their awareness of mechanisms of health inequalities, including how the upstream, social determinants of health lead to downstream effects and impact on behaviours and biology at an individual level, i.e. how societal structures impact on individual health.^[402] HCPs need to be aware of the limitations of tackling inequalities solely through healthcare, and the main drivers of health inequalities as social, economic and political determinants of health, related to the unfair distribution of power, income and wealth within societies. Awareness can also extend to how the research that we use in guidelines may either explicitly or implicitly exclude many of the patients we serve, and may therefore play a role in inequalities.377

Rigorous use of data

Data collection and analysis of service utilisation and outcomes are key to better understanding of what works best, and for whom. Collecting sufficient data to understand both chronic pain and equity outcomes from services and projects is also important to prevent ‘Intervention Generated Inequalities’ (IGIs) detailed in Gkiouleka et al.,401 who advocate for use of the PROGRESS plus criteria to capture adequate demographics. The core minimum dataset for chronic pain^[403] can also be used, and whatever project measures are appropriate. It is also worth noting the limits of evaluation through solely quantitative means, and the need to consider inclusive ways of data collection, analysis and evaluation.

Connected care

Inequities can occur at multiple points in the interfaces between services, from referral to follow-up. In a short review, make recommendations to mitigate inequities at service interfaces and these include: support mechanisms to help attendance at specialist appointments, care coordinators, inclusive and culturally competent communication, flexibility, co-location of services where possible, and using patient-initiated follow up on a case-by-case basis.^[404] Different groups of people may face different barriers to care, and community engagement may help to focus on improvements needed in your area. Given that pain and chronic pain are common experiences, connections between services and working to reduce unnecessary silos of services is important.

Relational continuity of care is helpful in particular for marginalised groups.[405]^{, [406]} Service design aspects that can foster continuity include: continuity slots in timetabling, personal lists, longer consultations, patient profiling (of who is likely to benefit most from continuity), flexibility in booking systems and appointments, flags on electronic patient records, advising patients of the processes of maintaining/ achieving continuity (if in place).406 Although more research is needed on fostering continuity with nurses, pharmacists and AHPs, taking a whole practice approach to improved ways of delivering continuity is needed, and it is fundamentally important to include reception staff within this.406

Power literacy

Power is a fundamental determinant of health and inequalities, and different groups may hold different levels of power.369 Power can be less tangible, and more difficult to feel the effects of, if one holds more power in the relationship[407] (for example, if you are the doctor, hold a higher degree of class privilege, are White with secure citizenship status). Mitigating any unhelpful impact of power as a practitioner is important to quality care, particularly when working with people experiencing the difficulties that come with an invisible condition, such as chronic pain – this Public Health Scotland video explains the concept well. Inequalities in power may affect engagement in consultations, may inhibit people asking questions that matter, or even raisings symptoms they are worried about, and lead to a focus on medications (seen as a legitimate topic in the medical realm of a consultation).398^,[408] ‘Intersectional’ is one of the five principles of equitable general practice promoted by Gkiouleka et al.,401 and brings in the idea of different types of health inequalities that may be experienced simultaneously for some with chronic pain, for example being marginalised by gender, racism, class and lack of fit for disabilities. Good examples of using intersectional and power literate approaches to investigate and support care needs for culturally and linguistically diverse groups with chronic pain are found in Dr Bernadette Brady’s work,[409]^,[410] and the EQUIP study in Canada.[411]

Health literacy

Health literacy can be understood as an individual factor, a characteristic of interventions, principles that can be applied to health systems (for example, how easy they are to navigate), and properties of community/ population knowledge.[412]^{, [413]} Individual health literacy involves a functional understanding of any health condition, ability to implement management, and to navigate health systems, and is seen as foundational to the condition management required by the patient in chronic disease management.375^,413 Health literacy may be a particular challenge with chronic pain due to the multiple meanings of pain, diagnostic uncertainty, and disjointed journeys that may occur. Lower levels of health literacy in individuals with chronic pain are associated with MLTC, lower education level, older age, being unemployed or retired, lower income, poorer disease-related knowledge, holding unhelpful beliefs about pain, and increased use of emergency services.[414]^{,[415],[416],[417]}

HCPs should be aware of the limitations of unconnected, information-only interventions, and initiating any digital-only interventions, both of which may exacerbate inequalities in care.370^,399 Recent years have seen a focus on improving approaches to health literacy through training and resources (available through NES), for example, using verbal communications strategies such as ‘teach back,’ where the HCP asks the patient to ‘teach back’ what they have taken from the consultation, and working to improve the ease of navigation through care including administrative processes. [418]^{, [419]} Making the experience of health systems more coherent and accessible is an important focus of improving health literacy.418^,419^,[420]

Trauma-informed approaches

Due to increased awareness of the impact of trauma and adverse childhood experiences on multiple outcomes including physical and mental health outcomes, trauma-informed approaches to health service provision are promoted; they are system-wide, ranging from trauma aware to trauma specialist services, and embed the approach to trauma through policies, practices and workforce development, with training available through NES.[421]^{, [422]} If taking a trauma-informed approach, HCPs should have routes of referral or treatment for trauma available for patients. Staff can take actions to improve care, including: giving space to develop trust and for patients to tell their stories; fostering patient choice and control, and being sensitive and aware of cultural, historical and gender-related.422^,[423],[424]

Welfare and financial Inclusion

Addressing social needs in healthcare can include multiple factors including food security and housing.^[425] HCPs can routinely enquire about money worries, signpost patients to welfare resources, and support with any work and care issues. A study in Canada found that the question: ‘do you (ever) have difficulty making ends meet at the end of the month?’ was an effective poverty screening question.[426] If asking verbally, patients may require an explanation as to why you are asking about this. HCPs then need to have signposting materials and resources available - connecting with local health improvement teams about resources and any financial inclusion pathways is worthwhile.[427] Note that if possible, Health Improvement may recommend cash-first approaches if available. Some practices may have advice workers embedded in their services.[428] The benefits system can be a stressful and complex experience for patients who may therefore benefit from having financial advice and support during the process, ideally connected to or available within healthcare.

Community centred care

Community engagement is a feature of the evidence reviews and recommendations outlined. Key features include: knowing your communities and their health needs; co-location of services within community halls and organisations; locating services close to community landmarks such as schools, libraries and cultural or recreational centres; contributing to the development of community transport options; providing targeted home visits; and remote consultation options.400^,401 There is evidence of some pain services involved in delivery of community exercise classes, community appointment days, and pain cafes, however, data collection and analysis are needed to evaluate their effectiveness. Healthcare Improvement Scotland already has a framework for community engagement and can offer support.[429]