Community Rehabilitation Service Delivery Results
An appropriate set of tools were developed for inclusion in the LTNC register. Of those asked, 96% of patients were willing to be registered, but only about one-third responded consistently to questionnaires.
The data provided support for the utility of the Needs and Provision Complexity Scale (NPCS) as a brief and practical tool for assessing complex needs among a group with significant physical and cognitive impairments. Two-thirds of the group required medical support and assistance with personal care; over 90% required on-going community rehabilitation.
The NPCS also provides a simple, reliable and scale-able tool for measuring met and unmet needs for health and social care. At six months post discharge, it demonstrated significant gaps between needs and service provision, especially regarding on-going community rehabilitation, equipment and social support. By contrast, needs for medical and nursing care were relatively well met. Provision of support for personal care above the level of predicted need suggested a deterioration of independence for some patients after discharge from in-patient rehabilitation, possibly due to the failure to meet their needs for rehabilitation and social support.
We found no evidence that demographic variables (age, gender, marital status, education, diagnosis) predicted how much rehabilitation/support people received after discharge from hospital. The best single predictor was dependency for basic care needs which accounted for 33% of variance in total NPCS score. Motor and cognitive impairment improved the predictive ability of the model to 40%. Similarly, we found no evidence that people with cognitive behavioural problems were likely to receive less rehabilitation - cognitive behavioural needs predicting 22% of the NPCS score. Whether disability is physical or cognitive, more disabled patients receive greater levels of health and social services. Clinical teams, however, reported insufficient staff and resources to support patients with complex needs – especially in vocational rehabilitation.
The relationship between levels of rehabilitation received after discharge and outcomes (dependency, community integration and perceived carer burden) was explored. We hypothesised that outcomes would be better when needs for rehabilitation and support were well-met. In fact we demonstrated the opposite relationship. The overall level of health and social services received was a strong negative predictor of community integration at six months and a positive predictor of dependency and perceived carer burden. At first sight it seems surprising that having one’s needs for healthcare and rehabilitation met is associated with poorer outcomes. However, at a practical level this is logical. Rehabilitation is a goal-oriented process, and therapy interventions will normally be withdrawn once goals have been met. Given the scarcity of community rehabilitation services it makes clinical sense for therapy teams to focus their efforts on patients with the greatest needs for support.
The average cost of formal care across the sample was £10,486 in the first six months. When informal care costs were included, the mean cost rose to £28,352. In-patient care accounted for 46% of total costs. Over half of the patients received care from family/friends, which accounted for 62% of total costs. During the second six-month period, use of many health and social care services reduced. Total formal care costs fell to an average of £6,824, but reliance on informal care increased – so that by 12-months it accounted for 75% of total costs. Total mean costs had reduced slightly to £25,803.
Over the whole 12-month follow-up period, significant predictors of total cost were cognitive and motor problems, and being in the physical, hidden or mixed dependency groups compared to being independent. This model could explain 35% of variation.Costs-analysis of met and unmet needs demonstrated a relative under spend on rehabilitation, social care and equipment at 6 months, compared with predicted needs, and an overspend on personal care and accommodation. Applying the costing algorithm within the NPCS suggests that appropriate investment in rehabilitation and support services could potentially save on average over £10,000 per person per year of over expenditure on personal care and accommodation – although admittedly families and informal carers currently bear the brunt of the extra costs.
Our findings suggest that a register in the form tested here would be used and appreciated by at least a third of patients. However, postal/telephone follow-up is labour intensive, and may not capture some of the most vulnerable patients. Integrated care planning reviews should normally involve face-to-face meetings with patients and/or carers and this may offer an appropriate route to data collection for the register.
While community-based services provided specialist multi-disciplinary care, some were under-staffed, and others felt under pressure to increase throughput of patients at the expense of providing high quality holistic services in the longer term, especially for patients with complex needs. The NPCS forms a simple practical tool to capture met and unmet needs and so assist clinical teams to identify and address any gaps in service provision at either an individual or population level.
Failure to meet needs for rehabilitation, social support and equipment provision in this sample was demonstrably associated with increased requirements for personal care. The burden of caring for people with LTNCs fell largely on their families and this burden increased over time.
This study was confined to the London region for pragmatic reasons. Further work is now required to match provision to need in other parts of the country and to provide more detailed analysis of the costs and cost-benefits of meeting unmet needs, so to determine future priorities for investment in service development.