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CHAPTER SIX SUMMARY AND CONCLUSIONS
Introduction
6.1 The purpose of this research was to develop a detailed overview of the characteristics, circumstances and health-care needs of adults (aged 16+) in Scotland. The research drew upon analysis of the Scottish Household Surveys (1999-2006) and the Scottish Health Survey 2003.
6.2 Both surveys collected data from private households and therefore did not include people with long-term conditions who lived in residential care. They were therefore likely to present cautious estimates of the prevalence of long-term conditions across Scotland. Figures from March 2006 show that there are 1,491 care homes for adults in Scotland. Between them they offer 43,489 places. The majority of homes (960) and places (38,099) are for older people 41.
6.3 Comparison between the surveys was limited because of the different definitions, terminology and questions used. Nevertheless, they each contributed insight into understanding the characteristics and needs of people with long-term conditions. SHS showed that these differed according to whether the person defined themselves as having a disability, a long-term illness, or both a disability and long-term illness. The nature of impairments and difficulties encountered differed. There were significant differences in the socio-demographic profile, and in location.
6.4 Meanwhile the SHeS did not allow for a distinction to be made between disability and illness, but did allow respondents to distinguish between limiting and non-limiting long-term conditions. This categorisation also revealed some interesting differences. While the health and healthcare needs of those with limiting long-term conditions are of obvious interest and concern to policy-makers, the results from the current research suggest that those with non-limiting long-term conditions cannot be ignored as they also had significant health care needs (e.g. as indicated by frequency of use of hospital services and GPs).
6.5 The results also confirm the heterogeneity of adults with long-term health conditions, and demonstrate that there is significant variation in needs and circumstances within the overall term 'long-term conditions' 42.
6.6 This concluding chapter further explores the significance of these issues, and considers the policy-related implications of the main findings from the research. Areas meriting further investigation are highlighted.
Characteristics of adults with long-term conditions
Prevalence
6.7 In 2005/06, around one quarter of adults in Scotland had a long-term illness or disability which limited their activities in some way. Although analysis of SHS since 1999 did not indicate a marked rise in prevalence of long-term conditions amongst adults, the fact that the Scottish population is ageing (e.g. the number of people aged 75 or over is expected to increase by 75% by 2031) may lead to a rise in long-term conditions because of the strong link between long-term conditions and older age. There was some indication that the proportion of long-term conditions had increased among the oldest age group (those aged 75 and over). As this age group is expanding (and ageing), attention needs to be paid to the increase in long-term conditions. Further investigation of this group is merited, perhaps by subdividing into two categories to examine separately those aged 75-84 and those aged 85+.
6.8 The proportion of households containing at least one member with a long-term condition had increased since 1999. This may well reflect the increase in number of older people (more likely to live in single-person households) but is also of interest in its own right because of implications for caring needs. All Our Futures: Planning for a Scotland with an Ageing Population (2007) 43 pledged to promote health services to allow older people to remain living at home. This policy may prompt more attention to be afforded to the nature and pattern of home-based care for older people and others with long-term conditions. (Care implications are considered further in paragraph 6.16.)
Location
6.9 Targeting health-care resources is an important consideration in Delivering for Health (2005). The findings from previous work (Barnett et al 2001), which suggested that there may be a U-shaped relationship between rurality and long-term conditions 44, was not supported in the current analysis. According to SHS figures, in 2005-2006, the highest prevalence of long-term conditions was seen in urban locations, while the lowest was in rural locations. There may be several explanations for these differences. Firstly, and obviously, the research reported by Barnett et al was not conducted in Scotland, and the results may be different because of geographical, cultural or health policy differences. Secondly, it considered only those with a limiting long-term condition. The current research showed differences between the geographic distribution of people with disabilities versus people with long-term illnesses ( SHS analysis), and between people with limiting and non-limiting long standing conditions ( SHeS data). This more detailed, locational analysis has implications for health care services, in that the 'map' of long-term conditions across Scotland changes according to the particular aspect (disability, long-term illness, limiting long-term condition, non-limiting long-term condition) being considered.
Employment
6.10 Previous work (e.g. Cummins et al 2005; Popham 2006) has highlighted the importance of economic activity status in relation to (ill) health and disability. The current analysis confirmed this importance and has drawn attention to the fact that employment of adults with long-term conditions may be falling behind employment rates for adults without illness/disability. If this is a trend then it is of some concern in that it may lead to a downward spiral of poverty and social exclusion (employment status was strongly related to household income and overall financial health). Further attention to monitoring the employment patterns of people with and without long term conditions would be merited.
Quality of life indicators
Perception of neighbourhood
6.11 Analysis at both individual and household level has shown that those with long-term conditions (particularly those with disabilities) were less advantaged across a range of indicators. These negative effects appeared enduring, in that they were stable across the SHS survey periods. Even where overall trends showed an improvement (e.g. in perception of neighbourhood quality), those with long-term conditions had a less positive viewpoint or experience. One exception appeared to be in relation to reliance on neighbours, where very positive responses were received from all adults, including those with long-term conditions. This was a new question in the latest SHS survey (2005/06), and it would be worth monitoring the pattern of responses in future years.
Access to services
6.12 In terms of physical access to services, it is of concern that those with long-term conditions were markedly more likely to report difficulty in accessing all services, and in particular the very services which they were most likely to use - namely doctors, chemists and hospitals. Part of the reason for this could be that they were less likely to drive, and substantial proportions reported finding it difficult to use both public and private transport. It may be worth investigating in more depth the full range of barriers preventing equality of access to day-to-day services.
6.13 Adults with long-term conditions were substantially less likely than those without long-term conditions to have home internet access, and a proportion reported difficulty using the telephone. All Our Futures: Planning for a Scotland with an Ageing Population (2007) highlighted the need to include older people in the 'digital age', to enable access to information technology. Home access to health care advice or services may, therefore, prove problematic because of barriers to technical access. Exploring how technical access could be increased for all those with a long-term condition would be a positive step.
Health-related quality of life
6.14 Detailed analysis of SHeS data showed that adults with limiting long-term conditions were more likely to have a poor quality of life. Compared to those without limiting long-term conditions, they were more likely to feel negative about their quality of life and specifically their health, to report episodes of acute illness, to be obese, to be heavy smokers, to be leading a physically inactive life and more likely to be at risk of potential psychiatric problems. The healthcare needs (use of healthcare services and prescribed medication) of these adults were also greater than those without limiting long-term conditions. All these differences were robust when other correlates of poor quality of life and healthcare needs were controlled for. These findings indicate that adults with limiting long-term conditions need to be considered holistically, taking into account not just the nature of their impairment/illness, but also bearing in mind the ways in which their health conditions affect wider aspects of their mental and physical health and wellbeing.
6.15 It may also be worth paying further attention to all aspects of health, including quality of life and health care needs, of adults reporting non-limiting illnesses. The findings presented here indicate that those who define their long-term illnesses as non-limiting were nevertheless more likely than those with no long-term illness to report poor physical quality of life and to have a BMI (body mass index) score of 30 or above, an indicator of obesity. They were also more likely than those with no long-term conditions to attend hospital as an outpatient and more likely to be taking prescribed medicines.
Care needs
6.16 The emphasis on care appeared to be very heavily focused on unpaid care provided by relatives who may or may not live in the same household as the long-term ill or disabled adult. A fifth of adults with long-term conditions were themselves carers for people outwith their households. There were indications that formal care was decreasing, in that the number of adults with long-term conditions who had a home help fell between 1999-2006. This was despite no change in the number or types of activities that people with long-term difficulties found difficult. An evaluation of free personal care 45, introduced to Scotland in 2002, showed that the balance of publicly funded care for the elderly has shifted to personal care (e.g. help with dressing, eating and toileting), while unpaid carers are mainly likely to carry out 'non-personal care', such as shopping and housework (i.e., those activities potentially falling within the remit of a home help). Moreover, care home statistics (2006) 46 show a decrease in the number of places available in care homes for older people in Scotland. A continued reliance on informal, unpaid care may cause problems as the population ages (especially if the proportions of older people and proportions of households with long-term conditions increase). Attention to care needs is already a key policy concern 47, but the current research points to the scale of future challenges. Further research into the sustainability of the current balance between paid and unpaid care may therefore be merited.
Overall implications for health-care strategy
6.17 The findings from this overview of adults in Scotland with long-term conditions have implications for the national health-care strategy on long-term conditions. In the 'three-level' model of long-term conditions management ( Delivering for Health (2005: Section 2.2)), it is estimated that 70-80% of people with long-term conditions belong to level 1 and that their health-care needs can be managed through a strategy of supported self-care. Level 2 consists of 15-20% of those with long-term conditions who are classed as 'higher risk cases', requiring a shared care model. Level 3 (3.5%) contains the most 'complex cases' who require more intensive professional care. It is likely that people in level 3 are less likely to be included in household based surveys ( future research could be used to examine the characteristics and needs of adults in residential accommodation), but the findings do provide some insight into the circumstances and needs of those in levels 1 and 2.
6.18 The current research has suggested that those with 'non-limiting' long-term conditions may need to be given further attention as a key constituent group of level 1. Moreover, it is far from straightforward to distinguish people in level 1 from those in level 2 on grounds of the nature of their impairment or even where they live. Their degree of impairment is linked not only to the nature of their illness or disability, but also to their social circumstances and psychosocial orientation. A key aspect of the strategy articulated in Delivering for Health (2005) is to provide appropriate help and support to increasingly help people to manage their own conditions. Such help and support will need to take into account the complex and varied characteristics, needs and circumstances of people with long-term health conditions in Scotland.
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