Assessing the impacts of community participation policy and practice in Scotland and England

Background: Community participation has become an integral part of many areas of public policy over the last two decades. For a variety of reasons, ranging from concerns about social cohesion and unrest to perceived failings in public services, governments in the UK and elsewhere have turned to communities as both a site of intervention and a potential solution. In contemporary policy, the shift to community is exemplified by the UK Government’s Big Society/Localism agenda and the Scottish Government’s emphasis on Community Empowerment. Through such policies, communities have been increasingly encouraged to help themselves in various ways, to work with public agencies in reshaping services, and to become more engaged in the democratic process. These developments have led some theorists to argue that responsibilities are being shifted from the state onto communities, representing a new form of 'government through community' (Rose, 1996; Imrie and Raco, 2003). Despite this policy development, there is surprisingly little evidence which demonstrates the outcomes of the different forms of community participation. This study attempts to address this gap in two ways. Firstly, it explores the ways in which community participation policy in Scotland and England are playing out in practice. And secondly, it assesses the outcomes of different forms of community participation taking place within these broad policy contexts. Methodology: The study employs an innovative combination of the two main theory-based evaluation methodologies, Theories of Change (ToC) and Realist Evaluation (RE), building on ideas generated by earlier applications of each approach (Blamey and Mackenzie, 2007). ToC methodology is used to analyse the national policy frameworks and the general approach of community organisations in six case studies, three in Scotland and three in England. The local evidence from the community organisations’ theories of change is then used to analyse and critique the assumptions which underlie the Localism and Community Empowerment policies. Alongside this, across the six case studies, a RE approach is utilised to examine the specific mechanisms which operate to deliver outcomes from community participation processes, and to explore the contextual factors which influence their operation. Given the innovative methodological approach, the study also engages in some focused reflection on the practicality and usefulness of combining ToC and RE approaches. Findings: The case studies provide significant evidence of the outcomes that community organisations can deliver through directly providing services or facilities, and through influencing public services. Important contextual factors in both countries include particular strengths within communities and positive relationships with at least part of the local state, although this often exists in parallel with elements of conflict. Notably this evidence suggests that the idea of responsibilisation needs to be examined in a more nuanced fashion, incorporating issues of risk and power, as well the active agency of communities and the local state. Thus communities may sometimes willingly take on responsibility in return for power, although this may also engender significant risk, with the balance between these three elements being significantly mediated by local government. The evidence also highlights the impacts of austerity on community participation, with cuts to local government budgets in particular increasing the degree of risk and responsibility for communities and reducing opportunities for power. Furthermore, the case studies demonstrate the importance of inequalities within and between communities, operating through a socio-economic gradient in community capacity. This has the potential to make community participation policy regressive as more affluent communities are more able to take advantage of additional powers and local authorities have less resource to support the capacity of more disadvantaged communities. For Localism in particular, the findings suggest that some of the ‘new community rights’ may provide opportunities for communities to gain power and generate positive social outcomes. However, the English case studies also highlight the substantial risks involved and the extent to which such opportunities are being undermined by austerity. The case studies suggest that cuts to local government budgets have the potential to undermine some aspects of Localism almost entirely, and that the very limited interest in inequalities means that Localism may be both ‘empowering the powerful’ (Hastings and Matthews, 2014) and further disempowering the powerless. For Community Empowerment, the study demonstrates the ways in which community organisations can gain power and deliver positive social outcomes within the broad policy framework. However, whilst Community Empowerment is ostensibly less regressive, there are still significant challenges to be addressed. In particular, the case studies highlight significant constraints on the notion that communities can ‘choose their own level of empowerment’, and the assumption of partnership working between communities and the local state needs to take into account the evidence of very mixed relationships in practice. Most importantly, whilst austerity has had more limited impacts on local government in Scotland so far, the projected cuts in this area may leave Community Empowerment vulnerable to the dangers of regressive impact highlighted for Localism. Methodologically, the study shows that ToC and RE can be practically applied together and that there may be significant benefits of the combination. ToC offers a productive framework for policy analysis and combining this with data derived from local ToCs provides a powerful lens through which to examine and critique the aims and assumptions of national policy. ToC models also provide a useful framework within which to identify specific causal mechanisms, using RE methodology and, again, the data from local ToC work can enable significant learning about ‘what works for whom in what circumstances’ (Pawson and Tilley, 1997).

Identifying health inequalities in individuals with major mental illness (MMI) using routine data

Abstract and Summary of Thesis: Background: Individuals with Major Mental Illness (such as schizophrenia and bipolar disorder) experience increased rates of physical health comorbidity compared to the general population. They also experience inequalities in access to certain aspects of healthcare. This ultimately leads to premature mortality. Studies detailing patterns of physical health comorbidity are limited by their definitions of comorbidity, single disease approach to comorbidity and by the study of heterogeneous groups. To date the investigation of possible sources of healthcare inequalities experienced by individuals with Major Mental Illness (MMI) is relatively limited. Moreover studies detailing the extent of premature mortality experienced by individuals with MMI vary both in terms of the measure of premature mortality reported and age of the cohort investigated, limiting their generalisability to the wider population. Therefore local and national data can be used to describe patterns of physical health comorbidity, investigate possible reasons for health inequalities and describe mortality rates. These findings will extend existing work in this area. Aims and Objectives: To review the relevant literature regarding: patterns of physical health comorbidity, evidence for inequalities in physical healthcare and evidence for premature mortality for individuals with MMI. To examine the rates of physical health comorbidity in a large primary care database and to assess for evidence for inequalities in access to healthcare using both routine primary care prescribing data and incentivised national Quality and Outcome Framework (QOF) data. Finally to examine the rates of premature mortality in a local context with a particular focus on cause of death across the lifespan and effect of International Classification of Disease Version 10 (ICD 10) diagnosis and socioeconomic status on rates and cause of death. Methods: A narrative review of the literature surrounding patterns of physical health comorbidity, the evidence for inequalities in physical healthcare and premature mortality in MMI was undertaken. Rates of physical health comorbidity and multimorbidity in schizophrenia and bipolar disorder were examined using a large primary care dataset (Scottish Programme for Improving Clinical Effectiveness in Primary Care (SPICE)). Possible inequalities in access to healthcare were investigated by comparing patterns of prescribing in individuals with MMI and comorbid physical health conditions with prescribing rates in individuals with physical health conditions without MMI using SPICE data. Potential inequalities in access to health promotion advice (in the form of smoking cessation) and prescribing of Nicotine Replacement Therapy (NRT) were also investigated using SPICE data. Possible inequalities in access to incentivised primary healthcare were investigated using National Quality and Outcome Framework (QOF) data. Finally a pre-existing case register (Glasgow Psychosis Clinical Information System (PsyCIS)) was linked to Scottish Mortality data (available from the Scottish Government Website) to investigate rates and primary cause of death in individuals with MMI. Rate and primary cause of death were compared to the local population and impact of age, socioeconomic status and ICD 10 diagnosis (schizophrenia vs. bipolar disorder) were investigated. Results: Analysis of the SPICE data found that sixteen out of the thirty two common physical comorbidities assessed, occurred significantly more frequently in individuals with schizophrenia. In individuals with bipolar disorder fourteen occurred more frequently. The most prevalent chronic physical health conditions in individuals with schizophrenia and bipolar disorder were: viral hepatitis (Odds Ratios (OR) 3.99 95% Confidence Interval (CI) 2.82-5.64 and OR 5.90 95% CI 3.16-11.03 respectively), constipation (OR 3.24 95% CI 3.01-3.49 and OR 2.84 95% CI 2.47-3.26 respectively) and Parkinson’s disease (OR 3.07 95% CI 2.43-3.89 and OR 2.52 95% CI 1.60-3.97 respectively). Both groups had significantly increased rates of multimorbidity compared to controls: in the schizophrenia group OR for two comorbidities was 1.37 95% CI 1.29-1.45 and in the bipolar disorder group OR was 1.34 95% CI 1.20-1.49. In the studies investigating inequalities in access to healthcare there was evidence of: under-recording of cardiovascular-related conditions for example in individuals with schizophrenia: OR for Atrial Fibrillation (AF) was 0.62 95% CI 0.52 - 0.73, for hypertension 0.71 95% CI 0.67 - 0.76, for Coronary Heart Disease (CHD) 0.76 95% CI 0.69 - 0.83 and for peripheral vascular disease (PVD) 0.83 95% CI 0.72 - 0.97. Similarly in individuals with bipolar disorder OR for AF was 0.56 95% CI 0.41-0.78, for hypertension 0.69 95% CI 0.62 - 0.77 and for CHD 0.77 95% CI 0.66 - 0.91. There was also evidence of less intensive prescribing for individuals with schizophrenia and bipolar disorder who had comorbid hypertension and CHD compared to individuals with hypertension and CHD who did not have schizophrenia or bipolar disorder. Rate of prescribing of statins for individuals with schizophrenia and CHD occurred significantly less frequently than in individuals with CHD without MMI (OR 0.67 95% CI 0.56-0.80). Rates of prescribing of 2 or more anti-hypertensives were lower in individuals with CHD and schizophrenia and CHD and bipolar disorder compared to individuals with CHD without MMI (OR 0.66 95% CI 0.56-0.78 and OR 0.55 95% CI 0.46-0.67, respectively). Smoking was more common in individuals with MMI compared to individuals without MMI (OR 2.53 95% CI 2.44-2.63) and was particularly increased in men (OR 2.83 95% CI 2.68-2.98). Rates of ex-smoking and non-smoking were lower in individuals with MMI (OR 0.79 95% CI 0.75-0.83 and OR 0.50 95% CI 0.48-0.52 respectively). However recorded rates of smoking cessation advice in smokers with MMI were significantly lower than the recorded rates of smoking cessation advice in smokers with diabetes (88.7% vs. 98.0%, p<0.001), smokers with CHD (88.9% vs. 98.7%, p<0.001) and smokers with hypertension (88.3% vs. 98.5%, p<0.001) without MMI. The odds ratio of NRT prescription was also significantly lower in smokers with MMI without diabetes compared to smokers with diabetes without MMI (OR 0.75 95% CI 0.69-0.81). Similar findings were found for smokers with MMI without CHD compared to smokers with CHD without MMI (OR 0.34 95% CI 0.31-0.38) and smokers with MMI without hypertension compared to smokers with hypertension without MMI (OR 0.71 95% CI 0.66-0.76). At a national level, payment and population achievement rates for the recording of body mass index (BMI) in MMI was significantly lower than the payment and population achievement rates for BMI recording in diabetes throughout the whole of the UK combined: payment rate 92.7% (Inter Quartile Range (IQR) 89.3-95.8 vs. 95.5% IQR 93.3-97.2, p<0.001 and population achievement rate 84.0% IQR 76.3-90.0 vs. 92.5% IQR 89.7-94.9, p<0.001 and for each country individually: for example in Scotland payment rate was 94.0% IQR 91.4-97.2 vs. 96.3% IQR 94.3-97.8, p<0.001. Exception rate was significantly higher for the recording of BMI in MMI than the exception rate for BMI recording in diabetes for the UK combined: 7.4% IQR 3.3-15.9 vs. 2.3% IQR 0.9-4.7, p<0.001 and for each country individually. For example in Scotland exception rate in MMI was 11.8% IQR 5.4-19.3 compared to 3.5% IQR 1.9-6.1 in diabetes. Similar findings were found for Blood Pressure (BP) recording: across the whole of the UK payment and population achievement rates for BP recording in MMI were also significantly reduced compared to payment and population achievement rates for the recording of BP in chronic kidney disease (CKD): payment rate: 94.1% IQR 90.9-97.1 vs.97.8% IQR 96.3-98.9 and p<0.001 and population achievement rate 87.0% IQR 81.3-91.7 vs. 97.1% IQR 95.5-98.4, p<0.001. Exception rates again were significantly higher for the recording of BP in MMI compared to CKD (6.4% IQR 3.0-13.1 vs. 0.3% IQR 0.0-1.0, p<0.001). There was also evidence of differences in rates of recording of BMI and BP in MMI across the UK. BMI and BP recording in MMI were significantly lower in Scotland compared to England (BMI:-1.5% 99% CI -2.7 to -0.3%, p<0.001 and BP: -1.8% 99% CI -2.7 to -0.9%, p<0.001). While rates of BMI and BP recording in diabetes and CKD were similar in Scotland compared to England (BMI: -0.5 99% CI -1.0 to 0.05, p=0.004 and BP: 0.02 99% CI -0.2 to 0.3, p=0.797). Data from the PsyCIS cohort showed an increase in Standardised Mortality Ratios (SMR) across the lifespan for individuals with MMI compared to the local Glasgow and wider Scottish populations (Glasgow SMR 1.8 95% CI 1.6-2.0 and Scotland SMR 2.7 95% CI 2.4-3.1). Increasing socioeconomic deprivation was associated with an increased overall rate of death in MMI (350.3 deaths/10,000 population/5 years in the least deprived quintile compared to 794.6 deaths/10,000 population/5 years in the most deprived quintile). No significant difference in rate of death for individuals with schizophrenia compared with bipolar disorder was reported (6.3% vs. 4.9%, p=0.086), but primary cause of death varied: with higher rates of suicide in individuals with bipolar disorder (22.4% vs. 11.7%, p=0.04). Discussion: Local and national datasets can be used for epidemiological study to inform local practice and complement existing national and international studies. While the strengths of this thesis include the large data sets used and therefore their likely representativeness to the wider population, some limitations largely associated with using secondary data sources are acknowledged. While this thesis has confirmed evidence of increased physical health comorbidity and multimorbidity in individuals with MMI, it is likely that these findings represent a significant under reporting and likely under recognition of physical health comorbidity in this population. This is likely due to a combination of patient, health professional and healthcare system factors and requires further investigation. Moreover, evidence of inequality in access to healthcare in terms of: physical health promotion (namely smoking cessation advice), recording of physical health indices (BMI and BP), prescribing of medications for the treatment of physical illness and prescribing of NRT has been found at a national level. While significant premature mortality in individuals with MMI within a Scottish setting has been confirmed, more work is required to further detail and investigate the impact of socioeconomic deprivation on cause and rate of death in this population. It is clear that further education and training is required for all healthcare staff to improve the recognition, diagnosis and treatment of physical health problems in this population with the aim of addressing the significant premature mortality that is seen. Conclusions: Future work lies in the challenge of designing strategies to reduce health inequalities and narrow the gap in premature mortality reported in individuals with MMI. Models of care that allow a much more integrated approach to diagnosing, monitoring and treating both the physical and mental health of individuals with MMI, particularly in areas of social and economic deprivation may be helpful. Strategies to engage this “hard to reach” population also need to be developed. While greater integration of psychiatric services with primary care and with specialist medical services is clearly vital the evidence on how best to achieve this is limited. While the National Health Service (NHS) is currently undergoing major reform, attention needs to be paid to designing better ways to improve the current disconnect between primary and secondary care. This should then help to improve physical, psychological and social outcomes for individuals with MMI.

Towards a Bourdieusian analysis of the disabled body and practice: embodying negative symbolic capitals and the uneasy experience of hysteresis

Within the last few years, disabled people have become the target of government austerity measures through drastic cuts to welfare justified through the portrayal of benefit claimants as inactive, problem citizens who are wilfully unemployed. For all that is wrong with these cuts, they are one of many aspects of exclusion that disabled people face. Attitudes towards disability are deteriorating (Scope, 2011) and disabled people are devalued and negatively positioned in a myriad of ways, meaning that an understanding of the perceptions and positioning of disability and the power of disabling practices is critical. This thesis will examine how Bourdieu’s theoretical repertoire may be applied to the area of Disability Studies in order to discern how society produces oppressive and exclusionary systems of classification which structures the social position and perceptions of disability. The composite nature of disability and multiple forms of exclusion and inequality associated with it benefits from a multipronged approach which acknowledges personal, embodied and psychological aspects of disability alongside socio-political and cultural conceptualisations. Bourdieu’s approach is one in which the micro and macro aspects of social life are brought together through their meso interplay and provides a thorough analysis of the many aspects of disability.