Long term conditions framework: consultation analysis

19. Question 17

Are there additional important considerations for people with long term conditions? For example, people who; live in deprived areas and rural and/or island areas, have protected characteristics e.g. race, disability, who are in inclusion health groups e.g. homelessness, or who experience stigma due to perceptions of their long term condition e.g. people with dementia?

Introduction

The vast majority (80%) of respondents answered Question 17. While a small number of respondents indicated in their responses that everyone should be treated equally, the majority of respondents who answered this question identified several additional important considerations for people with long term conditions. The main themes that emerged from these responses were:

• theme 1: tackling health inequalities
• theme 2: accessibility, availability, and capacity of services

Theme 1: Tackling health inequalities

Respondents said that tackling deep-rooted health inequalities was an important additional consideration for people with long term conditions. Points raised under theme 1 can be grouped as follows:

• identification, evidence and impacts of health inequalities
• what is required to address health inequalities

Identification, evidence and impacts of health inequalities

Respondents identified a range of factors that contributed to health inequalities for people with long term conditions and agreed with the examples provided in the question (for example, people who live in deprived areas, in rural and island communities). Some respondents pointed the Scottish Government to existing research or other evidence in support of this viewpoint.

Many respondents highlighted that people living in rural and island areas required additional consideration as they faced particular challenges due to transport difficulties, housing pressures, a growing ageing population and workforce shortages. Respondents felt that access to general and specialist services could be a “postcode lottery” and that this could lead to delays in diagnosis, treatment, and care, as well as wider issues such as increased social isolation.

Many respondents, particularly representative organisations/groups for health and social care staff, highlighted socioeconomic deprivation as a key driver of health inequalities. They said that people who live in deprived areas were more likely to have a range of health conditions and poorer health outcomes (for example, lower life expectancy) than those who live in less deprived areas.

They emphasised that a range of social and economic factors have an impact on people’s health (for example, education, income, employment) and should be considered.

Many respondents, particularly representative organisations/groups for health and social care staff, highlighted that people with protected characteristics were more likely to experience health inequalities. Respondents mentioned people with protected characteristics were more likely to experience certain conditions (for example, higher prevalence in some groups) and they were also more likely to experience discrimination, unconscious bias or exclusion within the health and social care system.

Many respondents, particularly service providers, highlighted that some groups and conditions experience stigma and this should be an additional consideration for long term conditions. Specific conditions mentioned in responses included for example, fibromyalgia, long COVID and ME, HIV, cerebal palsy, dementia, obesity. These respondents said stigma acts as a barrier to an individual’s willingness to engage with service providers, reinforcing isolation and exacerbating poorer health outcomes and health inequalities. It was noted that a poor experience with healthcare professionals could reinforce this and could lead to a mistrust in services.

Some respondents, mostly individual respondents and service providers, identified people in inclusion health groups (for example, homelessness) as an important additional consideration. Respondents said that these groups faced additional barriers to accessing treatment, care and support due to not having a permanent address – and that more action was needed to reach and support these individuals.

What is required to address health inequalities

Many respondents provided suggestions for what was required to tackle health inequalities. The points raised have been reflected throughout this consultation analysis report, and in summary included:

• whole-system, person-centred, holistic, and integrated models of care
• equitable, accessible and inclusive information and services
• trauma-informed approaches and practice
• ongoing workforce development and training for healthcare professionals
• greater co-design and co-production of services, involving people with lived experience of managing long term conditions
• employability and workplace-based support for people with long term conditions

Respondent quotes to illustrate the points raised are provided below.

“Groups such as people experiencing homelessness require holistic, trauma-informed, and flexible care due to the instability of their living circumstances... National standards and strategies must acknowledge these overlapping challenges and ensure that tailored, equitable support is built into service design and funding models across geography and population groups.” Public Health Scotland

“Consideration of the intersectionality of mental health alongside other factors which act as barriers to good health is absolutely essential in this framework. For example, different forms of discrimination – such as racism, sexism, ageism, ableism, etc. interact and compound the experiences of those with long term mental health conditions.” Royal College of Psychiatrists in Scotland (RCPsychiS)

Theme 2: Accessibility, availability and capacity of services

Many respondents, particularly individuals, reported the accessibility, availability and capacity of services was an important additional consideration for people with long term conditions. These responses were often framed in the context of a growing ageing population, and that more people were living with/would live with long term conditions. This would likely place an increasing demand for health and social care services and create workforce challenges for the health and social care sector. They also reemphasised the importance of information and services being available and accessible in a range of format and settings.