In this first analysis of needs and provision using the NPCS, we examined the extent to which health and social care needs (as assessed by the clinicians at discharge from inpatient rehabilitation) were and were not met during the first 6 months in the community (as reported by patients and their carers). The NPCS demonstrated significant gaps between needs and service provision, especially with respect to ongoing community rehabilitation, equipment and social support. By contrast, needs for medical and nursing care were relatively well met, and provision of personal care was higher than predicted.
There are a number of possible explanations for lower than predicted levels of service provision. The levels of need might have reduced over that period, leading to a corresponding reduction in service provision. Against this, however, were the static or slightly deteriorating levels of dependency, carer burden and community integration, which suggested that the group had ongoing needs for health and social support. Alternatively, respondents may have been unable to recall all the services received, or they may have failed to understand that they were being asked to consider service provision over the whole 6-month period. The systems in place to ensure full capture of services provided were (1) recording of the maximum level, if input had varied, (2) checking of questionnaires with follow-up telephone interviews to clarify any missing or ambiguous responses, (3) parallel recording of the CSRI. Moreover, the differential findings of ‘overprovision’ and ‘underprovision’ in the different domains of the scale also suggest that the reported deficits were not simply due to a misunderstanding of the questionnaire or lack of recall.
Similarly, there are several possible explanations for the higher than predicted levels of personal care provision. It could suggest a deterioration of motivation for independence outside the intensive rehabilitation environment with greater reliance on carer support; an overprotective attitude on the part of families and carers; or a failure on the part of the discharging clinicians to appreciate the true extent of care needs in the home environment. The latter possibility is unlikely as many of these patients were on graded discharge programmes prior to discharge, so their needs for care in the home environment were generally well understood.
Putting together the above findings, we believe that a more likely explanation is that the prediction of care requirements made by professionals at discharge was based on the assumption that appropriate ongoing rehabilitation, equipment and social support would be provided and, in the absence of these commodities, patients remained more dependent on others to meet their care needs.
The NPCS also provides useful insights into the relative cost implications of failing to provide the required level of ongoing support. The NPCS-estimated cost of providing for increased personal care and accommodation requirements was 3.5 times more than the underspend on rehabilitation and social support. The figures suggest that the potential sums that commissioners ‘save’ by not investing adequately in rehabilitation and support are exceeded by the additional costs of personal care and institutional care, to the tune of over £10 000/patient/annum. However, these findings must not be interpreted as an opportunity for disinvestment. Despite repeated calls for joined-up health and social care commissioning,20
these remain segregated in most parts of the UK at the current time—so that savings in the cost of housing and social support do not readily translate into extra funding being available for rehabilitation and other healthcare services. More importantly, the physical and financial burden of caring for people with LTNCs falls largely on their families and informal carers (80% in this study). So it is the patients/families who currently bear the brunt of those extra care costs, rather than the State.
Strengths and limitations
- Despite our conscientious efforts to trace patients, just under half (49%) of the original recruited sample provided NPCS-Gets data to compare with identified needs. Given the itinerant nature of this population and the difficulty that many patients with complex disability have in completing questionnaires,21 this low response rate is not unexpected. The demographic and baseline characteristics of the respondents and non-respondents were shown to be similar, suggesting that our findings are representative of the whole cohort, but the possibility of sample bias cannot be excluded.
- The NPCS is a relatively new tool. The psychometric evaluation12 was undertaken using data from the same cohort sample that is presented here. This has the advantage of providing direct evidence of the tool's performance in the very sample under investigation. However, the NPCS requires further testing in different populations before it may be considered to be fully robust.
- The costing algorithm, in particular, requires further testing and refinement. The costing assumptions were developed by professionals with specific experience in managing patients with LTnC. They require further testing in other populations and settings, and would need to be translated for use in other countries.
- The study design tends to assume that needs for (and provision of) services remain static over 6 months. This time frame was chosen for a sample of patients with complex neurological disability whose needs were not expected to change rapidly (as supported by the lack of change in dependency, carer burden and community integration). However, a formal re-evaluation of needs at 6 months would have strengthened the findings. The time-points for future evaluations will depend on the expected trajectory for change in the population under study.
- Other authors have highlighted the need to take into account both user and professional perspectives on met and unmet needs.22 The NPCS was originally designed as a framework for recording of information by clinicians in the context of integrated care planning. While this study demonstrates the feasibility of capturing user perspectives through the self-complete questionnaire and follow telephone interviews, it did not capture professional perspectives at 6 months, and nor did it allow for simultaneous reassessment of ongoing need. A combination of patient and clinician completion of the NPCS in the course of case review/planning meetings may provide better capture of both viewpoints in future evaluations, but has resource implications for research if these are not conducted as part of routine practice.
- Finally, the multicentre cohort was drawn from the nine tertiary specialist brain injury services in London. This sample was deliberately chosen to yield a study population with complex needs for ongoing community-based support, but the findings are limited to one geographic region in the UK and might not be generalisable to other settings.
Our findings resonate, however, with those generated by other researchers. Following the publication of the NSF for LTnC, the UK Department of Health funded a substantial research initiative to support implementation which has recently been published.23
Nationwide surveys by Fitzpatrick et al24
and Jackson and colleagues13
report that the majority of respondents were able to access the requisite healthcare (medical and nursing), but satisfaction was generally low in respect of the coordination of services and rehabilitation inputs were hard to identify.24
Respondents also reported difficulty in accessing support for personal care,24
and respite services25
—and lengthy waits for equipment and adaptations were also commonplace.26
Reports from elsewhere in the world27
similarly echo the experience that much of the burden of caring for people with neurological disability falls on family and informal carers with inadequate support and recognition from health and social care providers. However, the NPCS offers the opportunity to evaluate service provision (including rehabilitation), specifically in relation to individual needs, and to explore the potential cost implications of providing the required inputs.
Placed in the context of this wider research, therefore, we conclude that the NPCS represents a simple but useful tool, which has the potential to inform both clinical decision-making at the individual level, and also population-based service planning and delivery for patients with complex disabilities. Although it was developed in the context of LTnC, the tool is not impairment-specific and may well have application in other long-term conditions, but the costing algorithm is likely to require adjustment for different contexts. Its further use and exploration is now warranted.