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Journal of Intellectual Disability Research 487

doi: 10.1111/jir.12149

volume 59 part 5 pp 487–492 may 2015

Brief report

The relationship between area deprivation and contact with community intellectual disability psychiatry L. Nicholson1 & H. Hotchin2 1 NHS Greater Glasgow and Clyde, Learning Disabilities Psychiatry, Stobhill Hospital, Glasgow, UK 2 University of Glasgow, Glasgow, UK

Abstract Background People with intellectual disabilities (ID) have high rates of psychiatric illness and are known to live in more deprived areas than the general population. This study investigated the relationship between area deprivation and contact with ID psychiatry. Method Psychiatric case notes and electronic records were used to identify all patients who had face-to-face contact with community ID psychiatric services over 1 year in the North East Community Health Partnership of Greater Glasgow and Clyde (estimated population 177 867). The Scottish Index of Multiple Deprivation (SIMD) were determined for the patient sample and for the general population living in the same area. Results Between 1 June 2012 and 1 June 2013, 184 patients were seen by ID psychiatry over a total of 553 contacts, with valid SIMD data for 179 patients

Correspondence: Dr Laura Nicholson, NHS Greater Glasgow and Clyde, Learning Disabilities Psychiatry, Stobhill Hospital, 300 Balgrayhill Road, Glasgow, G21 3UR, UK (e-mail: [email protected]).

and 543 contacts. Fifty-two per cent of patients (n = 93) lived in the most deprived SIMD decile, and 90.5% (n = 152) in the lowest 5 deciles. Compared with the general population, there were significantly more patients than expected living in the most deprived decile (Fisher’s Exact test, P = 0.009) and in the most deprived 5 deciles (Fisher’s Exact test, P = 0.001). The median number of contacts was 2 (interquartile range = 1–3). There was no significant association between the number of contacts and SIMD decile. Forty-eight point one per cent (n = 261) of all contacts were with patients living in the most deprived decile and 88.6% (n = 481) in the most deprived 5 deciles. This was significantly more than expected compared with general population data (Fisher’s Exact test, P = 0.008 and Fisher’s Exact test, P ≤ 0.001). Conclusions In the area under study, contact with ID psychiatry was greater in more deprived areas. Given the high psychiatric morbidity of people with ID, if services do not adjust for deprivation, this may lead to further discrimination in an already disadvantaged population. Keywords contact, intellectual disability, mental disorders, psychiatry, psychosocial deprivation

© 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd

volume 59 part 5 may 2015

Journal of Intellectual Disability Research 488 L. Nicholson & H. Hotchin • Deprivation and contact with ID psychiatry

Introduction Deprivation at an individual or household level may be measured using a number of indicators including employment and educational status, income, access to services, health, housing and household composition (Nicholson 2012). These measures are of less relevance for adults with intellectual disabilities (ID), few of whom are in employment or own property. Currently there is no recognised measure of individual deprivation for people with ID. Another way of measuring deprivation is at an area or neighbourhood level, when indicators of deprivation at an individual or household level are averaged over a larger area. In the general population, area level deprivation reflects the deprivation and socioeconomic disadvantage of individuals in the resident community. The relationship between area level deprivation and socio-economic disadvantage in people with ID is much less clear cut, and there is very little literature in this field. In the general population, there is strong evidence of an association between mental ill-health and individual social deprivation (Wilkinson & Marmot 2003; Marmot 2012). There is also an association between area deprivation and poor mental health; even when deprivation has been adjusted for at an individual level (Fone et al. 2007). There may be an association between lower socio-economic status at an area level and increased contact with a range of psychiatric services (Tello et al. 2005). People with ID are more likely to experience social deprivation than the general population (Emerson 2007). They are more likely to live in deprived areas (Morgan et al. 2000; Cooper et al. 2010), and are more likely to be born into deprived households (Emerson et al. 2005; Leonard et al. 2005). However, the relationship between social deprivation at an area level and mental ill-health in adults with ID is less clear, with available literature suggesting no relationship between area deprivation and the prevalence or incidence of mental ill-health (Cooper et al. 2007; Smiley et al. 2007) or selfinjurious behaviour (Cooper et al. 2009). In addition, adults with ID living in more deprived areas may be less likely to make use of non-psychiatric secondary healthcare services, perhaps because of lower referral rates from primary care (Cooper et al. 2010).

However, even if there is no association between area deprivation and mental ill-health, psychiatric need is likely to be greater in more deprived areas because of the higher prevalence of ID. This has implications for the workload of community ID services, including ID psychiatry and ID nursing. Unless this is accounted for when resources are allocated, people with ID living in deprived areas will experience unequal access to services, leading to even greater discrimination in an already disadvantaged population. The authors hypothesised that patients attending a single community ID psychiatric service would live in more deprived areas than expected compared with the general population. In addition, it was hypothesised that there would be a greater number of contacts than expected from deprived areas. The aim of the study was to use psychiatric records and publically available data to support these hypotheses.

Methods Sample and measures The sample comprised all adults (16+) with ID seen by community ID psychiatry between 1 June 2012 and 1 June 2013 and living in the North East Community Health Partnership (CHP) of Greater Glasgow and Clyde. The North East CHP covers an estimated population of 177 867. The catchment area is covered by two Consultant Intellectual Disability Psychiatrists together contributing 10 clinical sessions per week. Deprivation was measured using the Scottish Index of Multiple Deprivation (SIMD) (The Scottish Government 2010). This measure was developed by the Scottish Government in order to support social research and policy in Scotland. In order to construct the SIMD, the whole of Scotland is divided into 6505 data zones, each containing between 500 and 1000 householders. The data zones are contained within local authorities and are designed to contain households with similar social characteristics. Each data zone is then ranked according to deprivation from the most deprived (1) to the least deprived (6505). The individual ranking is calculated by combining a number of indicators across the following domains: income, employment,

© 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd

volume 59 part 5 may 2015

Journal of Intellectual Disability Research 489 L. Nicholson & H. Hotchin • Deprivation and contact with ID psychiatry

health, education, skills and training, housing, geographic access and crime. Data zones are then grouped together by rank to create deciles.

Data collection The psychiatric case notes of all patients currently open to ID psychiatry were reviewed. In addition, patients seen in the past year but who were not currently open to ID psychiatry were identified and electronic records reviewed. The number of face-toface contacts at clinic or on home visits with an ID psychiatrist over 1 year was recorded for each patient. Publically available data (NHS National Services Scotland 2013) were used to ascertain: 1 The level of area deprivation for each patient by using their postcode to calculate the SIMD data for the datazone area in which they live. 2 The SIMD profile for the general population living in the North East CHP of Greater Glasgow and Clyde.

Statistical analysis IBM SPSS statistics version 19 was used to analyse the data. Descriptive statistics were used to describe the sample and general population SIMD data and they were compared using Fisher’s Exact and Mann–Whitney U tests. The Spearman-rho correlation co-efficient was used to describe the relationship between sample SIMD data and the number of contacts with psychiatry. Finally, Fisher’s Exact and Mann–Whitney U tests were used to compare general population SIMD data with the number of sample contacts in each decile of deprivation. Given clear a priori hypotheses, relevant tests were onetailed. Patient numbers were removed from the general population figures to maximise accuracy when making comparisons.

Power With an estimated sample size of 170 and an estimated general population size of 175 000, assuming approximately 70% lived in the lowest three deciles of area deprivation, if α = 0.05, the study had a power of at least 85% to detect a minimum difference of 10% in the proportions (Dupont & Plummer 1990).

Ethical permission Ethical approval was granted by proportionate review by NRES London Committee – City & East and R&D approval was granted by NHS Greater Glasgow and Clyde. NHS Greater Glasgow and Clyde acted as study sponsors.

Results Between 1 June 2012 and 1 June 2013, 184 patients were seen by ID psychiatry through a total of 553 contacts. There were valid SIMD data for 179 patients and 543 contacts. (SIMD data were missing from the publically available look-up tables for five patients.) Overall, the patient sample lived in deprived areas. Fifty-two per cent (n = 93) lived in the most deprived SIMD decile, and 90.5% (n = 152) in more deprived areas than average for Scotland (i.e. the lowest 5 deciles). The median decile was 1 with an interquartile range (IQR) of 1–2. The median SIMD rank was 649 (range 1 to 6505). However, this was in the context of a catchment area known to cover deprived inner city areas, and the general population also lived in deprived areas. Forty-two point eight per cent (n = 76 169) lived in the most deprived decile, and 81.0% (n = 144 011) in more deprived areas than average for Scotland. The median decile was 2 with an IQR of 1–4, and a median rank of 831 (Figure 1). Statistical analysis showed a significant difference between the patient sample and general population, with the patient sample living in more deprived areas than expected. There were significantly more patients living both in the most deprived decile (Fisher’s Exact test, P = 0.009) and in the most deprived 5 deciles (Fisher’s Exact test, P = 0.001). Comparing over the full range of deciles, a Mann– Whitney U test was also significant (P ≤ 0.001). The median number of contacts with ID psychiatry was 2, with an IQR of 1–3. A scatter plot did not suggest any relationship between the number of contacts with ID psychiatry and patient SIMD data. Spearman’s rho showed a positive association of 0.141 (i.e. patients living in more affluent areas had more contacts) but this finding was not significant (P = 0.06).

© 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd

volume 59 part 5 may 2015

Journal of Intellectual Disability Research 490 L. Nicholson & H. Hotchin • Deprivation and contact with ID psychiatry

expectations and tasks expected of psychiatry, local area factors (such as the local closure of former institutions) and the efficiency of the whole ID team. A simple comparison of caseload or new referrals across teams would not necessarily be able to evidence a relationship with area deprivation. This study looks at the effect of area deprivation across a single catchment area, so therefore has circumvented many confounders. This study did not find a significant relationship between the number of contacts with ID psychiatry and area deprivation. This may well represent a Type 2 error; the majority of patients only had a few contacts with ID psychiatry, and the study was underpowered.

Strengths and limitations

Figure 1 Area deprivation by Scottish Index of Multiple Deprivation (SIMD) decile of the patient sample and general population.

Analysis of contact with ID psychiatry showed that 48.1% (n = 261) of all contacts were with patients living in the most deprived decile and 88.6% (n = 481) in the most deprived 5 deciles. This was significantly more deprived than expected from general population data (Fisher’s Exact test, P = 0.008 and Fisher’s Exact test, P ≤ 0.001).

Discussion The central finding of this study is that in the area under study, patients in contact with community ID psychiatrists live in disproportionately more deprived areas than the general population. This finding is in keeping with previous research showing that people with ID are more likely to live in deprived areas, and is perhaps not surprising. However, this is an important finding that has not previously been described. When comparing psychiatric workloads across different catchment areas, there are a number potential confounders that need to be taken into account. These include not only deprivation, but also the efficiency of individual psychiatrists (typically just one or two per area), different team

A major strength of this study is that the data collection was almost complete, with SIMD data not available for only a small number of patients (n = 5). Recruitment to ID research is often difficult, and response rates are typically low (Lennox et al. 2005; Cleaver et al. 2010). Although there is a limit to the quantity and quality of data that can be extracted from case-note studies, this methodology bypasses recruitment difficulties and therefore allows for more complete and potentially less biased data collection. This study measured contact with ID psychiatry, but did not measure contact with other professionals from within ID services. In the UK a typical ID service might include representation from psychiatry, nursing, speech and language therapy, psychology, occupational therapy, physiotherapy and dietetics. It is likely that the results of this study generalise at least in part to other members of the ID team as psychiatry are often involved in the multidisciplinary care of patients, especially patients presenting with challenging behaviour. However, it would be necessary to repeat the study across the ID service to confirm this. In this study, 52.0% of all patients lived in the most deprived decile; however, this is in the context of a very deprived catchment area. An alternative way of presenting the data is to describe the lowest decile as having 21.5% more patients than expected. In other words, with an estimated population of 76 169 living in the lowest decile of the North East

© 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd

volume 59 part 5 may 2015

Journal of Intellectual Disability Research 491 L. Nicholson & H. Hotchin • Deprivation and contact with ID psychiatry

CHP catchment area, ID services should expect to meet the demand of a population of 92 545. However, further research is needed to clarify the relationship between deprivation and contact with psychiatric services in less deprived areas before it can be assumed that the results generalise to other areas. Only patient contact through clinics and home visits were included in this study. Review meetings, liaison work, mental health act and inpatient work comprise a significant part of the ID psychiatry workload, and this may have been unevenly distributed according to area deprivation. Excluding these data from the study may have led to bias. However, it would have been difficult to standardise data collection across these types of work, and not all contact would have been recorded in a way lending to data collection. In addition, some patient groups (such as hospital admissions) were very small and it would not have been possible to fully anonymise patient data. This patient sample was compared with general population deprivation measures because these are publically available and likely to be accurate, and also because population deprivation is a wellrecognised measure that may influence policy, services and funding. It would have been interesting to compare this patient sample with the rest of the population with ID living in the catchment area to investigate the relationship between mental ill health and deprivation in the population with ID. However, although there are available registers of people with ID living in the catchment area, these are unlikely to be complete. Recognition and registry of ID may well have an association with area deprivation and this could therefore have influenced any findings. This study investigated the association between deprivation and the number of contacts with psychiatry, using this as a proxy measure of individual psychiatric need; but the study was underpowered and the findings were not significant. This study did not directly measure the met and unmet psychiatric health needs of the population with ID in this catchment area. This study was not able to explore the reasons why patients with ID in contact with psychiatric services live in more deprived areas than expected. Previous literature suggests that people with ID are more likely to live in deprived areas, and this seems

the most likely explanation for the findings of this study. There is no evidence to suggest that in the population with ID, there is an association between mental ill health and area deprivation. Within the UK, healthcare is free at the point of care, with primary care acting as a gatekeeper to secondary services (such as ID psychiatry). The limited previous literature in this area has shown that people with ID living in more deprived areas have poorer access to secondary outpatient care (Cooper et al. 2010), and referral through primary care is therefore unlikely to explain why service utilisation is greater from deprived areas in this study. This study investigated utilisation of a single service and it is unlikely that the service would be harder to access from different places within the catchment area. If access to the service is indeed similar across the catchment area, then service utilisation is likely to reflect the underlying health needs of the population. If this is the case then more deprived areas will need greater input from ID psychiatry in order to provide an equitable service. This is not currently the case for all services.

Conclusions Within the area under study, there was a clear relationship between contact with community-based ID psychiatry and area deprivation. If this finding generalises to other populations, and unless this is accounted for in resource allocation, people with ID living in deprived areas may experience poorer access to psychiatric services. Given the high psychiatric morbidity in people with ID, this may lead to even greater discrimination in an already disadvantaged population.

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© 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd

volume 59 part 5 may 2015

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Accepted 5 June 2014

© 2014 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd