Prevalence and associated features of depression in women with Rett syndrome.

BACKGROUND: Little is known about depression among women with Rett syndrome (RTT) despite recent advances in knowledge about RTT. In this study, we aimed to establish the prevalence of depression among women with RTT as identified by a screening telephone interview and to explore the clinical factors associated with this. METHODS: The study employed the cross-sectional analysis of data from telephone interviews with carers of 56 women with RTT, using validated questionnaires for assessing mental health problems, challenging behaviour and RTT severity. RESULTS: Scores on the mental health assessment reached the affective/neurotic threshold in eight cases (14.3%). No significant differences were found between those reaching the threshold and those who did not in terms of severity of RTT phenotype, health problems or social circumstances. There was a significant association between screening identified depression and higher lethargy and social withdrawal. CONCLUSIONS: Screening identified depression was found among a sizeable minority of women with RTT. Further investigation is needed to establish a clinically validated prevalence of depression among this group and to identify behavioural features that would lead to prompt psychiatric assessment.

Ageing in Rett syndrome.

BACKGROUND: The aim was to gain a UK national sample of people with Rett syndrome across the age range and (1) conduct a cross-sectional comparison of age groups and (2) undertake a longitudinal follow-up. METHODS: From 308 potential participants approached to take part, a sample of 91 girls and women was achieved (29.5%). Their ages ranged from 4 to 47 years, and 71 were known to have a mutation in the methyl-CpG binding protein-2 (MECP2) gene. Seventy-two of the initial sample were followed up 16 months later, and 50 returned completed assessments (69.4%). Their ages ranged from 7 to 48 years, and 42 were MECP2 positive. Parental questionnaire measures of Rett syndrome specific characteristics, impulsivity, overactivity, mood, interest and pleasure, repetitive behaviour and self-injury were administered. RESULTS: Adaptive behaviour and behavioural characteristics of Rett syndrome were similar across age groups and, where assessed, stable over time, as were repetitive behaviours generally and self-injury. There was some suggestion of deterioration in health arising with ageing, principally contributed to by deteriorations in dental and gastro-intestinal problems both with moderate effect sizes. Indicators of mood, interest and pleasure differed significantly across age groups. The total scale score significantly deteriorated over time, with a moderate effect size. CONCLUSIONS: This study provides further evidence for the post-regression stability that characterises Rett syndrome. Emergent low mood in Rett syndrome requires further research.

Cognitive behavioural anger management intervention for people with intellectual disabilities: costs of intervention and impact on health and social care resource use.

BACKGROUND: Anger and aggression among adults with intellectual disability (ID) are associated with a range of adverse consequences for their well-being and that of their family or staff carers. The aims were to evaluate the effectiveness of an anger management intervention for adults with mild to moderate ID and to evaluate the costs of the intervention and its impact on health and social care resource use. This paper is concerned with the latter aim. METHODS: A cluster-randomised controlled trial was conducted involving day services for adults with ID in Scotland, England and Wales. Incremental costs of delivering the intervention and its impact on subsequent total health and social care package costs were calculated. Full data comparing costs between baseline and follow-up 10 months later were collected for 67 participants in the intervention arm and 62 participants in the control arm. Cost differences between the groups at follow-up, adjusted for baseline levels, were calculated using non-parametric bootstrapping controlling for clustering. RESULTS: The mean hourly excess cost of intervention over treatment as usual was £12.34. A mean adjusted cost difference of £22.46 per person per week in favour of the intervention group was found but this was not statistically significant. CONCLUSIONS: The baseline-adjusted cost difference at follow-up would result in a fairly immediate compensation for the excess costs of intervention, provided the difference is not a statistical artefact. Further research is needed to clarify the extent to which it might represent a real saving in service support costs.

A cluster randomised controlled trial of a manualised cognitive behavioural anger management intervention delivered by supervised lay therapists to people with intellectual disabilities.

BACKGROUND: Anger is a frequent problem for many people with intellectual disabilities, and is often expressed as verbal and/or physical aggression. Cognitive-behaviour therapy (CBT) is the treatment of choice for common mental health problems, but CBT has only recently been adapted for people with intellectual disabilities. Anger is the main psychological presentation in which controlled trials have been used to evaluate CBT interventions for people with intellectual disabilities but these do not include rigorous randomised studies. OBJECTIVES: To evaluate (1) the impact of a staff-delivered manualised CBT anger management intervention on (a) reported anger among people with mild to moderate intellectual disabilities, and (b) anger coping skills, aggression, mental health, quality of life and costs of health and social care; (2) factors that influence outcome; and (3) the experience of service users, lay therapists and service managers. DESIGN: A cluster randomised controlled trial based on 30 day centres (15 intervention and 15 control). Intention-to-treat comparisons of outcomes used a two-level linear regression model to allow for clustering within centres with baseline outcome levels as a covariate. Comparison of cost data used non-parametric bootstrapping. Qualitative analysis used interpretative phenomenological analysis and thematic analysis. SETTING: Recruited day centres had four-plus service users with problem anger who were prepared to participate, two-plus staff willing to be lay therapists, a supportive manager and facilities for group work, and no current anger interventions. PARTICIPANTS: A total of 212 service users with problem anger were recruited. Thirty-three were deemed ineligible (30 could not complete assessments and three withdrew before randomisation). Retention at follow-up was 81%, with 17 withdrawals in each arm. Two to four staff per centre were recruited as lay therapists. Eleven service users, nine lay therapists and eight managers were interviewed. INTERVENTIONS: The manualised intervention comprised 12 weekly 2-hour group sessions supplemented by 'homework'. Lay therapists received training and ongoing supervision from a clinical psychologist. Treatment fidelity, group attendance and resources used in intervention delivery were monitored. MAIN OUTCOME MEASURES: The primary outcome was the service user-rated Provocation Index (PI), a measure of response to hypothetical situations that may provoke anger. Secondary trial outcomes were the key worker-rated PI; the service user- and key worker-rated Profile of Anger Coping Skills (PACS); the service user-rated PACS imaginal provocation test (PACS-IPT), a measure of response to actual situations known to provoke anger; aggression; mental health; self-esteem; quality of life; and health and social care resource use. Assessments were administered before randomisation and at 16 weeks and 10 months after randomisation. RESULTS: Fourteen treatment groups were delivered, each with 12 sessions lasting an average of 114 minutes, with a mean of 4.9 service users and 2.0 lay therapists. The mean hourly cost per service user was £ 25.26. The mean hourly excess cost over treatment as usual was £ 12.34. There was no effect of intervention on the primary outcome - self-rated PI. There was a significant impact on the following secondary outcomes at the 10-month follow-up: key worker-rated PI, self-rated PACS-IPT and self- and key worker-rated PACS. Key workers and home carers reported significantly lower aggression at 16 weeks, but not at 10 months. There was no impact on mental health, self-esteem, quality of life or total cost of health and social care. Service users, key workers and service managers were uniformly positive. CONCLUSIONS: The intervention was effective at changing anger coping skills and staff-rated anger. Impact on self-rated anger was equivocal. With hindsight there are reasons, from an analysis of factors influencing outcomes, to think that self-rated PI was not a well-chosen primary outcome. Widespread implementation of manualised lay therapist-led but psychologist-supervised anger management CBT for people with mild to moderate intellectual disabilities is recommended.

Adults with intellectual disabilities and challenging behaviour: the costs and outcomes of in- and out-of-area placements.

BACKGROUND: People with severe challenging behaviour are vulnerable to exclusion from local services and removal to out-of-area placements if locally available supported accommodation is insufficient to meet their needs. There are concerns about the high costs and potentially poorer outcomes of out-of-area placements but relatively little is known about how costs and outcomes compare with provision for a similar population placed locally. METHODS: Costs, quality of care and a wide range of quality of life outcomes for 38 people with intellectual disabilities and challenging behaviour living in-area and 38 similar people living out-of-area were compared. The two groups were matched as far as possible on risk factors for out-of-area placement. The out-of-area group represented two-thirds of the total number of people who originated from the territory served by the largest specialist health service in Wales and were placed in residential settings at least 10 miles beyond its boundaries. RESULTS: There was a mixed pattern of quality of care and quality of outcome advantages between the two types of setting, although in-area placements had a greater number of advantages than out-of-area placements. Unexpectedly, out-of-area placements had lower total costs, accommodation costs and daytime activity costs. CONCLUSIONS: No overall conclusion could be reached about cost-effectiveness. A number of potential reasons for the differences in cost were identified. Although additional resources may be needed to provide in-area services for those currently placed out-of-area, government policy to provide comprehensively for those who want to live locally, irrespective of their needs, appears to be attainable.

Investigating low adaptive behaviour and presence of the triad of impairments characteristic of autistic spectrum disorder as indicators of risk for challenging behaviour among adults with intellectual disabilities.

BACKGROUND: Identification of possible personal indicators of risk for challenging behaviour has generally been through association in cross-sectional prevalence studies, but few analyses have controlled for intercorrelation between potential risk factors. The aim was to investigate the extent to which gender, age, presence of the triad of impairments characteristic of autism and level of adaptive behaviour were independently associated with level of challenging behaviour among adults with intellectual disabilities. METHODS: Five datasets were merged to produce information on challenging behaviour, adaptive behaviour, presence of the triad of impairments, gender and age of 818 adults. Variables were entered into a multivariate linear regression, which also tested the interaction between the presence of the triad of impairments and level of adaptive behaviour. RESULTS: Presence of the triad of impairments, level of adaptive behaviour, their interaction, and age, but not gender, significantly and independently contributed to the prediction of challenging behaviour. Presence/absence of the triad of impairments moderated the effect of adaptive behaviour on challenging behaviour. The inverse relationship found in the absence of the triad of impairments was virtually removed when present. CONCLUSIONS: This study has shown that it is necessary to control for intercorrelation between potential risk factors for challenging behaviour and to explore how interaction between them might moderate associations.

Diagnostic grouping among adults with intellectual disabilities and autistic spectrum disorders in staffed housing.

BACKGROUND: There is little evidence to guide the commissioning of residential provision for adults with autistic spectrum disorder (ASD) in the UK. We aim to explore the degree and impact of diagnostic congregation among adults with intellectual disabilities (ID) and ASD living in staffed housing. METHODS: One hundred and fifty-seven adults with intellectual disabilities from a sample of 424 in staffed housing were assessed as having the triad of impairments characteristic of ASD. They lived in 88 houses: 26 were non-congregate (40% or fewer residents had the triad) and 50 congregate (60% or more had the triad); 12 with intermediate groupings were eliminated. Non-congregate and congregate groups were compared on age, gender, adaptive and challenging behaviour, house size, staff per resident and various measures of quality of care and quality of outcome. Comparisons were repeated for Adaptive Behavior Scale (ABS)-matched, congregate and non-congregate subsamples. RESULTS: Non-congregate settings were larger, had lower staff per resident and more individualised social milieus. Groups were similar in age and gender but the non-congregate group had non-significantly higher ABS scores. The non-congregate group did more social, community and household activities. After matching for ABS, these outcome differences ceased to be significant. Non-congregate settings were significantly larger and had significantly more organised working methods. CONCLUSIONS: The findings are consistent with other research that finds few advantages to diagnostic grouping.

A general practice-based study of the relationship between indicators of mental illness and challenging behaviour among adults with intellectual disabilities.

BACKGROUND: Existing studies tend to show a positive association between mental illness and challenging behaviour among adults with intellectual disabilities (ID). However, whether the association is direct or artefactual is less clear. The purpose was to explore the association between psychiatric status and level of challenging behaviour, while controlling for adaptive behaviour and occurrence of autistic spectrum disorders. METHODS: Data were collected on the age, gender, adaptive and challenging behaviour, social impairment and psychiatric status of 312 adults with ID. Participants were divided according to psychiatric status, group equivalence in adaptive behaviour and the presence of autistic spectrum disorders achieved, and differences in challenging behaviour explored. In addition, multiple regression was used to examine the association between psychiatric status and challenging behaviour after controlling for other participant characteristics and to test whether the interaction between psychiatric status and adaptive behaviour added significantly to explanation. RESULTS: Challenging behaviour was higher among participants meeting threshold levels on the psychiatric screen. The regression analysis confirmed the association and demonstrated an interaction between total score on the psychiatric screen and level of adaptive behaviour. This moderated effect showed the relationship between psychiatric status and challenging behaviour to be stronger at lower adaptive behaviour. CONCLUSIONS: This study reinforces previous findings that psychiatric morbidity among people with ID is associated with higher levels of challenging behaviour and supports predictions that this association is more pronounced for people with severe ID. The precise nature and causal direction of the association requires further clarification. However, the understanding of how psychiatric problems might contribute to challenging behaviour needs to be part of the clinical appreciation of such behaviour.

A general practice-based prevalence study of epilepsy among adults with intellectual disabilities and of its association with psychiatric disorder, behaviour disturbance and carer stress.

BACKGROUND: Although the elevated occurrence of epilepsy in people with intellectual disabilities (ID) is well recognized, the nature of seizures and their association with psychopathology and carer strain are less clearly understood. The aims were to determine the prevalence and features of epilepsy in a community-based population of adults with ID, and to explore whether the presence of epilepsy was associated with greater psychopathology or carer strain. METHODS: Data were collected on the age, gender, place of residence, adaptive and challenging behaviour, social abilities and psychiatric status of 318 adults from 40 general practices, together with the degree of malaise and strain of family carers. For participants with epilepsy, a nurse collected information on seizures, investigations, treatment and carer concerns by interview. Association between epilepsy and psychiatric morbidity, challenging behaviour and caregiver malaise or strain, was explored by comparing those with epilepsy with a comparison group matched on adaptive behaviour. RESULTS: Fifty-eight participants (18%) had epilepsy: 26% were seizure free, but 34% had extremely poorly controlled seizures. Earlier onset and seizure frequency were associated with adaptive behaviour. Carer concerns were related to seizure frequency and a history of injury. There were no significant differences in psychopathology, carer malaise or caregiver strain between the matched epilepsy and non-epilepsy groups. CONCLUSIONS: This study supports the high occurrence and chronicity of epilepsy among people with ID. While psychopathology and carer strain is common within this population, underlying disability-related factors appear to be more important than the presence of epilepsy per se.

Correlation between subjective and objective measures of outcome in staffed community housing.

BACKGROUND: A distinction is made between objective and subjective assessment when quality of life evaluation is considered. The aim was to explore the association between objective and subjective appraisals within similar quality of life domains. METHODS: Correlations between scores on objective and subjective quality of life measures concerning choice, activity and integration were investigated by administering measures to the residents of a random sample of 47 small community housing services. Correlations between the measures and resident adaptive behaviour were also investigated. RESULTS: All objective measures were significantly correlated with adaptive behaviour but only one subjective measure was. With level of adaptive behaviour controlled, 6/7 correlations between pairs of objective measures were significant. Fifteen of the 16 correlations between objective and subjective measures were insignificant. CONCLUSIONS: Assessments of objective life conditions and personal satisfaction appear to be distinct. Their suitability for different purposes and the notion that subjective appraisal of life may be under homeostatic regulation are discussed.

Treatment and management of challenging behaviours in congregate and noncongregate community-based supported accommodation.

OBJECTIVES: To compare the nature and prevalence of use of procedures employed to treat and manage challenging behaviours across two approaches to providing community-based supported accommodation for people with intellectual disabilities (ID) and severe challenging behaviour: noncongregate settings where the minority of residents have challenging behaviour, and congregate settings where the majority of residents have challenging behaviour. SETTING: Community-based supported accommodation for people with ID and challenging behaviour. DESIGN: Longitudinal matched groups design. MAIN OUTCOME MEASURES: The nature and prevalence of use of procedures employed to treat and manage challenging behaviours. Observed and reported severity of challenging behaviours. RESULTS: Both types of settings were associated with low prevalence of use of behavioural technologies for the reduction of challenging behaviour (less than 15% of participants). In contrast, high proportions of participant received antipsychotic medication in both noncongregate (56%) and congregate (80%) settings. Congregate settings were associated with the increased use of physical restraint as a reactive management strategy, with over half of participants being in receipt of physical restraint by two or more members of staff. DISCUSSION: Changes in reported and observed challenging behaviour over a 10-month period were slight. The use of evidence-based behavioural technologies for the reduction of challenging behaviour may have led to better outcomes.

Responsiveness to staff support: evaluating the impact of individual characteristics on the effectiveness of active support training using a conditional probability approach.

BACKGROUND: Active support training was fully conducted in 38 community houses accommodating 106 adults with intellectual disabilities (ID; group 1), but not in a further 36 accommodating 82 adults with ID (group 2). The aims of the present study were to analyse whether staff became more effective in supporting resident activity after the implementation of active support, and whether there was evidence of differential responsiveness by people with differing status in relation to adaptive behaviour, psychiatric diagnosis, challenging behaviour or autism. METHODS: Observations of staff:resident interaction and resident engagement in activity were taken before and after active support training. Changes in Yule's Q statistics, indicating the likelihood that resident engagement in activity followed staff giving residents verbal instruction or non-verbal assistance, were compared for the two groups. In addition, changes in similar statistics were compared for residents within group 1: (1) with Adaptive Behaviour Scale (ABS) scores above and below 180; and (2) with and without severe challenging behaviour, the triad of social impairments and mental illness. RESULTS: Yule's Q for engagement given non-verbal assistance significantly increased post-training among group 1, but not among group 2. Similar significant increases were found among group 1 residents with ABS scores below 180 without challenging behaviour, with and without the triad of social impairments, and without mental illness, but not with an ABS score above 180, with challenging behaviour and with mental illness. CONCLUSION: The present analysis reinforces previous studies on the effectiveness of active support training for adults with more severe ID (i.e. with ABS scores below 180). Active support was as effective for people with the triad of social impairments as for those without it. However, the effectiveness of support offered to people with challenging behaviour or mental illness did not significantly increase.

Sedation effects on responsiveness: evaluating the reduction of antipsychotic medication in people with intellectual disability using a conditional probability approach.

BACKGROUND: The impact of the withdrawal of long-term antipsychotic medication prescribed to adults with intellectual disabilities on behavioural functioning has been investigated using a real-time direct observation methodology. Previous authors have reported a significant post-reduction difference in engagement in activity between the successful drug reduction and control groups. METHOD: In the present study, sequential analysis of the relationship between staff:resident interaction and behavioural engagement was used to give a more precise measure of the extent to which user responsiveness is affected by drug withdrawal. Responsiveness was measured by calculating the likelihood of engagement occurring given the occurrence of staff interaction. This likelihood was represented by the statistic Yule's Q-value. RESULTS: High Yule's Q-value results pre- and post-baseline were found, indicating that clients were highly responsive to staff interaction. However, Yule's Q-value did not significantly increase following drug withdrawal. CONCLUSION: The present study provides no evidence of greater responsiveness following the withdrawal of psychotropic medication.

The adaptive behavior scale-residential and community (part I): towards the development of a short form.

A potential 24-item short form (SABS) of the 73-item Adaptive Behavior Scale-Residential and Community (Part I) (ABS-RC2; Nihira et al., 1993a, b) was developed, based on data from two diverse UK samples of adults with intellectual disabilities living in residential services (n = 560 and 254). SABS factor and total scores showed good internal reliability in both samples (alpha 0.89-0.98), and were highly correlated with their full ABS-RC2 Part I equivalents (r = 0.97-0.99). Regression equations were calculated for SABS factor and total scores against their full ABS-RC2 Part I equivalents. Levels of agreement between predicted quartile scores (derived from the regression equations) and actual full ABS-RC2 Part I quartile scores were high (kappa 0.75-0.89; percentage agreement 82%-92%). It is concluded that the SABS is a potentially useful research tool, although further work is clearly needed to establish the reliability and cross-cultural validity of the instrument.

Living with support in a home in the community: predictors of behavioral development and household and community activity.

The purpose of this article was to review studies of behavioral development and household and community activity among adults with mental retardation living in community residential services and to distill knowledge about the factors that influence outcome. Research points to behavioral development occurring across the full spectrum of disability but influenced by mental retardation syndrome and the acquisition of pivotal skills. However, engagement in household and community activities has been found to be strongly related to individual adaptive behavior. People with more severe mental retardation are vulnerable to leading lives characterized by underoccupation and lack of community involvement. Moving from institutional to community-based residential services may be accompanied by significant increases in adaptive behavior, but a plateau effect on subsequent development has also been reported. There is substantial evidence to suggest that key aspects of effective teaching technology may be absent in community-based residential environments. Community settings support greater engagement in household and community activities than institutions. Ordinary housing stock and normative architecture and standards of material enrichment are to be preferred. The use of normative housing constrains group living to relatively small scale, but there is little evidence that smaller size within this range is to be preferred to larger size. There is little evidence to suggest that higher staff-to-resident ratios lead to uniformly better outcomes, but staff orientation, working methods, and performance are important influences. Little is known about what precise characteristics of community location give rise to greater community integration. MRDD Research Reviews 7:75-83, 2001.

Living circumstances of children and adults with mental retardation or developmental disabilities in the United States, Canada, England and Wales, and Australia.

The purpose of this article was to collate evidence to describe where people with mental retardation or developmental disabilities live in five developed countries: United States, Canada, England, Wales, and Australia. Family homes are important dwelling places for people with mental retardation. They are the home of the great majority of children with mental retardation and a considerable proportion of adults with mental retardation. The likelihood of placement outside the family home increases with adulthood and progressively as people age. Adults with mental retardation live in a wide variety of settings, with formal residential provision frequently dependent on the arrangements that the authorities responsible for providing service support have chosen to make. There has been a considerable move away from accommodating people in large segregated and geographically isolated institutions in the countries considered. However, the current range of accommodation includes much with a distinctively different character to the homes where other citizens live. Many people still live in larger groups than would be ordinarily found in typical homes and this may necessitate departure from the architectural norm. In all of the countries considered, there has been a recent trend towards small community settings, compatible with typical housing architecture. This appears furthest advanced in the U.S. but is discernible elsewhere. Availability of residential services at a national level varies between 100 and 155 places per 100,000 total population. Regional variation within countries is even greater. In no case is the national availability considered adequate to meet the demand arising from changing need or expectations. MRDD Research Reviews 7:115-121, 2001. (c) 2001 Wiley-Liss, Inc.

Evaluation of the dissemination of active support training in staffed community residences.

Our aim was to replicate Active Support, a staff training intervention designed to increase the assistance given to adults with severe mental retardation living in community residences in order to increase their participation in activities. Training was conducted in 38 residences, involving 303 staff members and 106 persons with mental retardation. Active Support resulted in significant increases in assistance and engagement in activity. Significant correlations between participant abilities, receipt of assistance, and levels of engagement were found. Active Support was found to be of greater benefit to people with lower adaptive behavior and to have a diminishing value for people with higher adaptive behavior, implying that its implementation should be matched to the support needs of residents.

The effectiveness of staff support: evaluating active support training using a conditional probability approach.

Active Support, a package of procedures which includes activity planning, support planning, and training on providing effective assistance, was introduced in five community residences serving 19 adults with severe mental retardation following a multiple baseline design. Real-time observational data were collected on the level of assistance residents received from staff and their engagement in activity. Active Support was shown in a companion paper (Jones et al., 1999) to increase the levels of assistance residents received and their engagement in activity. Increased assistance was particularly experienced by the behaviorally less able and the disparity in activity between the more and less able was reduced. In the analysis presented here, the effectiveness of assistance was evaluated before and after Active Support training by calculating the likelihood of engagement occurring given the occurrence of assistance. This likelihood was represented by the statistic, Yule's Q. Yule's Q significantly increased following Active Support training, an increase that was maintained at follow-up. The increased effectiveness of assistance was related to other research findings on the relationship between staff: resident interaction patterns and resident behavior.

Reducing antipsychotic medication in people with a learning disability.

BACKGROUND: The use of antipsychotic drugs in people with learning disabilities is currently receiving intensified scrutiny and attempts are being made to reduce it. AIMS: A randomised controlled trial was designed to investigate factors influencing antipsychotic drug reduction among people with learning disabilities prescribed such medication for behavioural problems. METHOD: Thirty-six participants randomly allocated to the experimental group underwent four, monthly 25% drug reduction stages. There were no planned drug changes for the control group (n = 20). RESULTS: Twelve participants (33%) completed full withdrawal; a further seven (19%) achieved and maintained at least a 50% reduction. Drug reduction was associated with increased dyskinesia and higher activity engagement but not increased maladaptive behaviour. Some setting characteristics were associated with drug reinstatement. CONCLUSIONS: A substantial proportion of people with learning disability prescribed antipsychotic medications for behavioural purposes rather than for treating psychotic illness can have their drugs reduced or withdrawn.

Strategic planning and progress under the All Wales Strategy: reflecting the perceptions of stakeholders.

Nominated representatives from the various stakeholder interests, i.e. social services, health, education, voluntary organizations, parent groups and self-advocacy groups, involved in the implementation of the All Wales Strategy for the development of services for people with intellectual disability were interviewed 2 years after the end of the initial 10-year phase. Interviewees were asked to reflect on the strengths and weaknesses of policy implementation, including: changing priorities, planning arrangements, agency roles, central guidance and financial mechanisms, consumer participation, and the impact of more recent policy or structural developments. Despite recognition of the leadership of the Welsh Office, the shift in thinking achieved, the developments made in joint agency collaboration and in consumer participation in planning, and an increasing competence to plan effectively over time, the overriding perception was that more could have been made of the opportunity afforded by the clearest and best resourced central government policy within the UK in this area. At the heart of this judgement lay concerns about pragmatic rather than strategic planning, a failure to link annual service developments to a final comprehensive end point and a related failure to integrate planning to meet community needs with hospital resettlement Factors which may have contributed to these weaknesses are discussed, as are lessons for subsequent community care policy.