Executive Summary

The ten studies in the Long-Term Neurological Conditions Research Initiative (LTNC RI) were commissioned to update and extend the available evidence on the nature, quality and outcomes of care for people with Long-Term Neurological Conditions (LTNCs) in England. They set out to provide a robust evidence-base to inform all those working to improve the quality of services and care.

Main findings – service provision

The main feature of the overall service picture that emerges is one of the uneven, patchy nature of current service levels across the whole pathway for people with neurological conditions. There is inequity both geographically and with regard to specific conditions, particularly in the availability of specialist healthcare and social care support - both key improvement areas for the National Service Framework (NSF) for LTNCs.

Overall, a few aspects of service delivery, including treatment and early rehabilitation, appear satisfactory while other areas, such as continuity and coordination of ongoing care, family support, provision of information, vocational rehabilitation and end of life care, emerge as much less so. There are specialist neurological services demonstrating pockets of excellence, but these are not universally available to all who need them.

Commissioning intelligence appears variable and joint commissioning planning arrangements did not always take LTNCs fully into account. Joint working between health and social care and between different parts of the health sector was limited, due to incompatible information systems and poor communications.

Community Inter-disciplinary Neurological Rehabilitation Teams (CINRT) and specialist nurses play crucial roles in helping to ensure continuity and co-ordinating care. Voluntary organisations often lead and establish specialist nurse services.

Access to specialist services (physiotherapy, occupational therapy and speech and language therapy) appears satisfactory, although they are usually time limited which restricts continuity. Access to day opportunities, psychological support and vocational rehabilitation are more problematic.

Main findings - service users’ and carers’ experiences

Service users and carers report that there are some fundamental problems still to be addressed, although there is evidence of some satisfaction with services – more so with health than with social care. Overall there is confusion and uncertainty about who co-ordinates care, particularly at times of transition – from child to adult, or at the end of life.

The experience of feeling in control and having choice in care was variable, with a majority saying they did not have a personalised care plan and support to self-manage. The use of Direct Payments or personalised budgets was not widespread. Where they were not being used there was evidence that more information about care options was required and that the additional responsibilities were daunting for some service users and carers.

Both service users and carers reported that their opportunities for work and social contact were restricted by lack of information, inaccessible facilities, attitudinal barriers and/or lack of practical support. Support for entering or continuing in paid employment was seen to be particularly limited.

The studies reveal the extent to which care is provided by informal carers. They found that three-quarters of those being cared for needed 'significant help' due to physical impairments, hidden impairments such as cognitive difficulties, or both. On average, caring activities were reported to take up 11.6 hours per day - over 80 hours a week, but despite this their role was often not recognised, with few receiving assessments in their own right. Carers valued equipment to help with caring tasks, but would have liked more information and advice. They also used respite and replacement care services. It was found that replacement care would be more widely taken up, to enable carers to work, if levels of knowledge and competence in neurological conditions among care staff could be improved.

The majority of participants from BME groups considered the services they received were fair and equitable.

Main findings - costs

The research shows that during the study period 2004-2008 the largest single formal care cost was hospital in-patient care. There was also some evidence of cost differentiation between groups or conditions. The highest costs for inpatient and/or residential care, for example, were incurred by those in the youngest (17-29) age group, most with sudden onset conditions. In contrast, the largest numbers of those spending time in in-patient/residential care were those with progressive conditions in the 50-69 age groups.

Primary care data showed a 60% increase in medication costs and a more than 20% increase in consultation costs over this period, due to the progressive nature of the health conditions. The costs of secondary care were shown to vary according to the specific health condition, with no significant trends discernable over time.

Social care budgets similarly varied according to diagnosis, with people living with different conditions requiring different levels of support, equipment and technology. The studies revealed how the balance of costs for social care shared between the state and the individual was different for a range of services.

The evidence indicates that responsibility for providing care is increasingly taken on by informal carers.  It can be seen as an ‘inverse cost curve' which is likely to be steepest for those caring for people with progressive conditions involving both physical and hidden impairments, and for those nearing the end of life.

There is strong evidence to demonstrate that health-related quality of life is worse for people with neurological conditions and their carers than it is for the general adult population. It was also found to be the case that the health and well-being of carers can be worsened by poor quality services. This can have cost consequences for formal care providers. It was also found that 2 out every 5 carers had stopped, or reduced, paid employment or study to take on the caring role, but a third would have continued in employment if the support they needed had been available.

Implications for practice and policy

The model of continuity presented by Bernard et al (2009) describes the elements of relationship continuity, management continuity, information continuity and continuity of social context and personal agency and is used as a framework to discuss what works well for people with LTNCs and their carers.

Relationship continuity is facilitated by:

Management continuity is facilitated by:

Information continuity is facilitated by:

Continuity of social context and personal agency is facilitated by:

Recommendations are made for meeting the outcomes as follows:


1.  To be better supported in getting a diagnosis, adjusting to and managing the condition – good continuity in healthcare

2.  To be able to get on with the “ordinary business of everyday life” and to be better supported in doing so – good continuity in social care

3. To have increased opportunities to participate in, and contribute to, society on equal terms – improved social and economic inclusion


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