Chronic pain service delivery - draft framework: consultation

Annex A: Draft Equality Impact Assessment and Fairer Scotland Duty

Equality Impact Assessment - Results

Title of Policy: Framework for Pain Management Service Delivery

Summary of aims and desired outcomes of Policy: The Framework vision is to deliver person-centred, effective and safe care that improves the quality of life and wellbeing of people with chronic pain in Scotland.

Directorate: Division: team:

Healthcare Quality and Improvement Directorate

Planning and Quality Division

Clinical Priorities Team

Executive summary

The aim of the Framework is to provide timely access to effective, safe and person centred care and support that improves the quality of life and wellbeing of people living with chronic pain in Scotland.

Many people in Scotland experience chronic pain and it is important that services, care and support are available at the right time, in the right place. The Commitments set out in the Framework are intended to address the key issues identified by people with chronic pain, NHS healthcare and service workers, third-sector partners and other key stakeholders with an interest in improving pain management support in Scotland.

The process of gathering evidence on chronic pain and its impact has identified a number of groups where further engagement will be carried out to inform implementation of the Framework and to understand and address existing or potential health inequalities.

Specifically, work will be carried out to engage those from areas of socioeconomic deprivation, older people, women with chronic pain, and certain ethnic minority backgrounds. Work will also be carried out to engage with representatives of rural and island communities and young people and their families to understand the barriers they may be experiencing in accessing support for chronic pain under existing care models.

These activities, and the feedback shared through public consultation on the Framework, will support identification of specific actions to address inequalities faced by different groups living with chronic pain in Scotland. Work will also be carried out to explore new models of engagement with people with lived experience of chronic pain to provide continued input and feedback into the delivery of the vision and aims of the Framework.

Background

In the 2020 Programme for Government^[21], we announced a commitment to work with local, regional and national stakeholders, including patient groups, to develop the current Scottish Service Model for Chronic Pain and to publish a new Framework for Chronic Pain Service Delivery in 2021.

We said this Framework would agree to develop pain management pathways that are sustainable, improve health outcomes and minimise harmful variation.

The Framework will contribute to the delivery of the Scottish Government's National Performance Framework^[22] to enable people to:

• be healthy and active
• respect, protect and fulfil human rights and live free from discrimination

This means supporting people to live long, healthy and active lives regardless of where they come from in Scotland, and taking a whole system approach to health and wellbeing that is integrated, preventative and person-centred. We will achieve this by using evidence intelligently to continuously improve and challenge existing healthcare models.

During 2021 we have worked with the National Advisory Committee for Chronic Pain, relevant stakeholders and across the Scottish Government and its partners to shape the Framework aims and priorities.

These are:

Aim A: Person-Centred Care

Ensure access to appropriate information and support based on an individual's needs.

Aim B: Timely Access to Care

Support people to access the care they need when they need it

Aim C: Safe, Effective Treatments

Ensure people have choice of effective treatments

Aim D: Improving Quality of Life and Wellbeing

Invest in training, data and research to improve care and support

The new Framework is intended to build on the outputs of policy, service improvement and stakeholder engagement activities carried out over the past decade.

Who will it affect?

It is intended that the Framework policies will affect people living in Scotland with chronic pain (pain that has been present for longer than 12 weeks), their families, carers and service providers working across sectors. In Scotland it is estimated that 5% report severe chronic pain, which impacts their daily activities and significantly affects all aspects of their physical, psychological and social health.^[23,24] Patients with chronic pain will often have one or more other long-term conditions.^[25]

For service providers this Framework aligns with existing work that places importance on delivering change at pace on how care and support is co-ordinated across sectors for people living with complex needs that affect their quality of life such as chronic pain.

For service users this Framework aligns with a wider focus on improving public health by actively promoting self-care and self-service, with more focus on education and information that help people understand the choices and tools available to them.

The majority of formalised care for people experiencing chronic pain is delivered outwith specialist settings, predominantly in general practice, both as a standalone condition or as co-morbidity of another presenting condition.^[26]

Public Health Scotland produce quarterly statistics on first appointments to Pain Clinics in secondary care.^[27]

Hospital (Secondary Care) - pain clinics.

Year	Referrals	Accepted referrals	Seen
2019	20,959	18,120	12,073
2020	12,412	10,479	6,234

The data demonstrates that services were impacted, and continue to be, by measures put in place to respond to the COVID-19 pandemic. After being temporarily paused in March 2020, chronic pain services started to resume in June 2020 as part of the planned remobilisation of services.^[28] In September 2020 a Framework for Recovery of the NHS Pain Management Services was published with further guidance on the resumption and continuation of services.^[29]

The Scope of the EQIA

This interim EQIA document sets out evidence of the potential impact of the Framework on groups with protected characteristics, and describes how we will work with to identify and address negative impacts or promote positive impacts and advance equality or good relations

Key Findings

Step 1: What we know so far

We recognise different people have different needs. Equality legislation covers the protected characteristics of: age, disability, gender reassignment, gender including pregnancy and maternity, race, religion and belief, and sexual orientation.

We continue to seek opportunities to learn about potential impacts to inform the IA process. This has involved:

• working with the National Advisory Committee for Chronic Pain to consider the drivers and challenges behind introducing change to the current model;
• engagement with key stakeholders including people with lived experience of chronic pain, third-sector organisations and professional bodies;
• we have collaborated with the Health and Social Care Alliance (the ALLIANCE) to design and deliver a survey of people with lived experience of chronic pain (including those who may be in a caring role for someone with the condition).^[30]
• speaking with Health Board management and pain service leads to identify opportunities and barriers to service improvement;
• ongoing monitoring and feedback of 'on the ground' impact and response to COVID-19 on pain services from wider networks; and
• engagement with relevant policy leads across Scottish Government and identification of complementary policy drivers and activities.

As well as evidence gathered through engagement with stakeholders to develop this Framework, we also have previous work to draw on including the Scottish Public Health Network report on Chronic Pain^[31], Scottish Access Collaborative Design Workshop report (2019)^[32], feedback received through the 2020 Modernising Patient Pathways Programme survey^[33] and priorities highlighted by the Chronic Pain Lived Experience Group (being facilitated by the Health and Social Care Alliance).

Step 2: Relevant impact factors

The following summary is interim evidence against relevant protected characteristics. It is not intended to be a definitive statement or a full assessment of impacts. It presents preliminary points that require further consideration by the Scottish Government to inform the decision-making process during and after consultation on the draft Framework has taken place.

Chronic pain often presents as a comorbidity or element of multi-morbidity.^[34] Studies have suggested that there is an increased co-occurrence of chronic pain with depression and cardiovascular disease. Improvements in cancer treatments and care have led to improved survival rates, meaning that chronic pain is becoming more prevalent in those who have had cancer. In patients with chronic obstructive pulmonary disease (COPD), chronic pain is common, and those with COPD and chronic pain were found to have more depression, do less physical exercise, and have higher breathlessness scores than those without COPD. For those living with neurological conditions, the prevalence of chronic pain is double that of the general population, and those with spinal cord injury have the highest levels of pain.^[35] The Framework will therefore consider how to promote care for chronic pain across other clinical pathways.

There are links between chronic pain and poor mental health. One study found that 60.8% of people with chronic pain had severe depression.^[36,37,38] The Framework recognises these links and seeks to benefit people by improving coordination and planning of relevant support and services.

There are links to an individual's physical or sedentary activity. Weight may exasperate joint pain as a symptom of other long term conditions^[39] and higher impact chronic pain is associated with reduced physical activity and increased inactivity. One study suggests that nearly 40% of people who are obese experience chronic pain, and that the pain they report is more likely to be moderate to severe than chronic pain in those who are not obese.^[40]

There some data to indicate a higher prevalence and impact of chronic pain amongst certain BAME groups.^[41] A survey of 500 000 people in the UK showed that those who self-identified as white were less likely to report chronic pain than those reporting black, Asian, or mixed ethnicity.^[42]

There is some evidence to suggest pain may arise either as a direct ('Long COVID' symptom) or indirect (reduced activity, poorer mental health) result of the COVID-19 pandemic. Estimates of chronic pain prevalence after ICU vary from 14% to 77% depending on timescale, method of measurement, and population. Pain also appears to be an important factor affecting ability to return to work and quality of life up to 5 years after discharge. It is likely that those surviving critical illness with COVID-19 could be at particular risk of developing chronic pain.^[43]

Chronic pain is generally reported more frequently in women.^[44] Additionally, they also suffer from female-specific pains; particularly in their pelvis, including period pain (dysmenorrhoea) and the pains associated with diseases such as endometriosis. A systematic review found that women who experience pain are more likely to use maladaptive coping strategies, which predispose them to chronic pain and poorer functional ability.^[45]

The evidence shows that reporting of chronic pain increases with age, however some data suggests some increase in reporting amongst young people.^[46] In one study it was reported that the prevalence of chronic pain increased with age ranging from 18% among those aged 16 to 34 years to 53% among those 75 years and over. Age 45 to 54 years (39%) was the point when chronic pain became significantly higher than the average for all adults.^[47]

Data from NHS England indicates that LGB people report higher levels of painful conditions (e.g. arthritis) compared to heterosexual people.^[48] There is a limited data on the impact of chronic pain on transgender individuals with some indication that gender identify may play a role in pain sensation.^[49]

Recommendations and Conclusion

We will continue to work with stakeholders to ensure that equality continues to be considered during the consultation and implementation phases of the Framework.

We will also work with stakeholders during the implementation of the Women's Health Plan, development of the Older People's strategy and other relevant Scottish Government policies which impact people with chronic pain.

We will continue to work with health and care providers, researchers and people with chronic pain to develop how data is collected and used at all levels in order to inform meaningful and impactful change and improvement for people with chronic pain.

As part of Implementation planning we will identify the risks to delivery and will work with partners to put action into place to mitigate them.

What might prevent outcomes being achieved?

Achieving the desired outcomes will be dependent on a number of factors not least the ongoing response to the COVID-19 pandemic, which continues to have such an unprecedented impact on society and all public services.

Feedback from across stakeholder groups indicates that workforce and infrastructure capacity, addressing training needs and skill gaps, health literacy, availability of information, associated costs and competing priorities may present challenges to making progress at pace and achieving the desired outcomes.

Fairer Scotland Duty - Summary

Title of Policy: Scottish Framework for Pain Management Service Delivery

Summary of aims and expected outcomes of strategy, proposal, programme or policy:

The aim of this framework is to provide timely access to effective, safe and person centred care and support that improves the quality of life and wellbeing of people living with chronic pain in Scotland.

It is intended to involve and impact people with chronic pain, their families and carers and those involved in the delivery, planning and provision of formal and informal support and services.

The Framework sets out a number of key Aims that are intended to deliver improved care for people with chronic pain:

Aim A: Person-Centred Care

Ensure access to appropriate information and support based on an individual's needs.

Aim B: Timely Access to Care

Support people to access the care they need when they need it.

Aim C: Safe, Effective Treatments

Ensure people have choice of effective treatments.

Aim D: Improving Quality of Life and Wellbeing

Invest in training, data and research to improve care and support.

Summary of assessment findings

Evidence:

The Scottish Burden of Disease Study (2016) found that the most deprived areas of Scotland have double the rate of illness or early death than less deprived areas. People living in more deprived areas are more likely to live in ill health and die prematurely.^[50]

There are a range of factors which appear to be associated with an increased risk of developing chronic pain, including demographic, socio-economic, psychological and clinical factors.^[51]

Research suggests that it seems likely that social disadvantage, trauma and psychological stress also increase people's risk of developing chronic pain.

Conditions associated with chronic pain are also associated with deprivation.^[52] People who have perceived income inequalities, and high levels of neighbourhood deprivation are more likely to experience chronic pain. People who are not in employment because of ill health or disability are more likely to have chronic pain than those who are employed.^[53]

More evidence is required about the barriers people with chronic pain in lower socio-economic groups may face in accessing care and support. We are undertaking more work to improve the quality and quantity of available data on these groups and other related factors as a priority within the Framework.

There are also gaps in our understanding around the link between chronic pain, work absence and help-seeking behaviours. While employment support is not within the scope of the Framework, there are opportunities to ensure that relevant information on the behaviours, barriers and impact faced by those with chronic pain is shared across relevant policy areas in order to address inequalities across public services and policies.

Possible impacts:

One of the key priorities in the Framework is to achieve timely access to care for people with chronic pain. Commitments aligned to this priority seek to reduce the barriers experienced by those accessing services, including those groups identified in our research.

The Framework also sets out to improve understanding of chronic pain and its impact amongst the public and healthcare workforce through a number of interlinked measures. It is intended that raised awareness will also lead to more timely help-seeking and access to effective and appropriate support. This is likely to also include non-health related support, for example employment or finance related advice or opportunities to address isolation or loneliness from both relevant public services and the third-sector.

The Framework also highlights the need to increase the collection of data related to both demographic information and wider determinants of health, such as deprivation. Insight into these risk factors will enable identification of specific prevention and management approaches that take account of these predisposing factors and the impact of pain on those affected. Actions are set out in the Framework to address this.

Options to strengthen the strategy impact on inequalities of outcome:

Option 1: Increase systematic identification, collection and analysis of demographic, health and outcome related data.

Benefits of this option are that it would provide an opportunity to inform policy development and implementation through the use of robust data linking patient experience, health and care outcomes and other relevant factors including socio-economic demographics.

Cons of this option in the short-term are that implementing such exercises at the local and national levels takes time to implement and may be perceived as a lesser priority by health and care partners compared to more urgent system demands. There are often usually long lead-in times for analysis and publication of data.

Option 2: Increase representation of people from groups impacted by inequalities in engagement and implementation activity.

The benefit of this option would be to ensure that people with lived experience of inequality in relation to chronic pain would be directly involved in informing policy development and service improvement activities. Robust engagement would ensure that policy-makers improve how they communicate proposed policies and would gain an improved understanding of the barriers faced by groups affected by inequality. Given the cross-cutting complexity of the drivers of socioeconomic deprivation it would also strengthen the links between relevant policy areas to ensure greater collaboration and coordination of effort to reduce barriers more generally for deprived groups.

Cons of this option include the difficulties in ensuring meaningful involvement, engagement and representation from disadvantaged groups. This is likely to have increased in challenge during the COVID-19 pandemic and the shift to digitally-led engagement activities rather than in more local, known community settings.

Changes to plan:

Option 1 remains a longer-term strategic goal in order to support increased understanding of the experience and barriers faced by people with chronic pain.

Therefore, in line with Option 2, we will build on the knowledge and experience gained from engagement activities carried out with people with lived experience of chronic pain to date in developing the Framework. To achieve this, we will undertake a review of existing engagement structures. We will ensure that priority is given to approaches that increase opportunities for groups identified facing inequalities to be consulted and involved as we implement the Framework.