Key Findings

The Shape of the Services

The overall picture

The absence of a comprehensive baseline picture at the time of the NSF for Long-term Conditions makes it impossible to accurately assess the extent of progress achieved since its launch. However, mapping the evidence from the LTNC RI studies against the NSF Quality Requirements (see: Appendix One) gives some indication of current areas of relative strength and weakness. Overall, a few areas of service development, including treatment and early rehabilitation appear satisfactory while other areas, such as continuity and coordination of 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.

The main feature of the overall service picture is one of the uneven or patchy nature of current services. There is inequity both geographically and with regard to specific conditions, and this is particularly found to be the case in respect of the availability of specialist healthcare and social care support - both key improvement areas for the NSF LTNC (Fitzpatrick et al, 2010; Bernard et al, 2010; Hoppitt et al, 2011). The factors contributing to this unevenness of service provision are complex and reflect the historical status of LTNCs as a highly specialised domain of healthcare. This problem was clearly identified in the NSF document (DH, 2007) and, in this respect at least, the evidence collected here does not indicate consistent improvement since that time.

Commissioning behaviour

Overview and spotlight studies alike identify lack of effective, 'joined-up' commissioning, particularly between health and social care bodies, but also within the health service itself. The evidence suggests this is resulting from lack of continuity across organisational and/or sector boundaries, cultural barriers between delivery organisations and professional bodies, incompatible information systems, inconsistent resources and variable eligibility criteria (Abbott and Carpenter, 2009; Bernard et al, 2010; Jackson et al. 2011; Playford, 2011; Hoppitt et al, 2011; Cook and Atkin 2011; Dawes, 2010).

The quality of commissioning intelligence appears variable. Bernard et al’s survey of PCTs (2010) reveals generally poor awareness of the extent of LTNCs and service needs at local level and of how demand is managed. Under half of PCTs (47%) systematically recorded the number of people with LTNCs in their populations and only one third recorded all LTNCs. Nine out of ten Trusts (89%) did not know how many people in their area had comprehensive care plans. This lack of awareness appears to be particularly acute for the rarer neurological conditions (Hoppitt et al, 2011).

Evidence of integrated commissioning or planning across the health and social care sectors is mixed. Bernard et al’s survey reveals that almost three-quarters of PCTs had joint commissioning arrangements in place in 2008, but that the majority (62%) of these were informal in nature. Just over one in ten (12%) had formal arrangements with joint accountability or pooled budgets. Under half (44%) had completed a Joint Strategic Needs Assessment (JSNA) that referred to LTNCs generally or specifically. Half had written action plans to implement the NSF (including integration); although very few (5%) appeared to have been implemented effectively. Two-thirds had established cross-sector implementation groups, the majority (88%) of which were operational, with over two-thirds (68%) of these actively involving service users or carers.

Service co-ordination

The evidence from both overview and spotlight studies suggests that joint working between health and social care sectors remains limited, again inhibited by poor communication and lack of shared, or compatible, intelligence (Bernard et al, 2010; Abbott and Carpenter, 2009). There were also problems in the coordination between health care services, with a lack of interdisciplinary working and poor care coordination identified in many hospital settings (Hoppitt et al, 2011; Bernard et al, 2010). There was evidence of formal links between emergency departments and neuro-specialists (including tertiary centres), however, which provided clear pathways to community rehabilitation and support. This was also the case for specialist rehabilitation units.
Community Inter-disciplinary Neurological Rehabilitation Teams (CINRTs) were found to play a key role in ensuring continuity and coordination of care, including liaising with housing services to secure appropriate accommodation and facilitating access to specialist equipment or adaptations (Bernard et al, 2010). Nearly three quarters (73%) of PCT respondents employed more than one CINRT, although the majority only covered people with specific conditions (e.g. head injury) and under half included all LTNCs.
Both overview and spotlight studies (Bernard et al, 2010; Cook and Atkin 2011; Abbott and Carpenter 2009; Jackson et al, 2011b) indicate that nurse specialists can be crucial in co-ordinating services and facilitating continuity of care. However, although the nurse specialist role was found in most (93%) PCTs responding, only a minority of PCTs (20%) covered all LTNCs and provision was uneven across neurological conditions. Only half of responding PCTs reported providing epilepsy nurse specialists, for example, while over three quarters were providing nurse specialists for those with Multiple Sclerosis (MS) (78%) or Parkinson’s (PD) (79%), both conditions with much lower prevalence rates. Where CINRTs or nurse specialists were not available, researchers found no evidence of alternative models of care co-ordination (Bernard et al, 2010).

Specific services

The overview studies indicate that community services providing opportunities for social interaction, leisure and community activities, access to peer support, information and advice were limited and uneven (Bernard et al, 2010; Jackson et al, 2011a; Fitzpatrick et al, 2010). The majority of day care services, for example, were for people with specific health conditions, such as head injury or stroke. These studies also highlight the significant role of local impairment-specific support groups in the delivery, and sometimes planning and commissioning, of services (Bernard et al, 2010; Fitzpatrick et al, 2010).

Under one third (29%) of the participants in Jackson et al’s (2011a) study had received community rehabilitation or day care (on average six times a month) in the year before the survey. Around half (51%) had contact with out-patient therapy services of one kind or another, although the extent to which their on-going needs were being met is unknown. A similar picture was found in Jackson et al’s more in-depth study (2011b). Both Bernard et al (2010) and Jackson et al (2011a) found the provision of psychological support for people with long-term neurological conditions or their carers to be particularly scarce, with problematic referral systems and long waiting lists. Nearly two-thirds of PCTs (63%) surveyed described these services as ‘very difficult’ or ‘difficult’ to access (Bernard et al, 2010).

Access to physiotherapy services, however, was identified as being good. Over nine out of ten PCTs in Bernard et al’s study (2010) considered that neuro-physiotherapy was easily available, either via out-patient or community services, although over half indicated that it was time-limited and based on treatment goals, rather than solely on patient need. They were equally divided on whether service users were able to self re-refer, following discharge.

Bernard et al (2010) also report that occupational therapists (OTs) with expertise in neurology were employed in the majority (82%) of PCTs surveyed, most commonly as part of a CNIRT. As with physiotherapists, however, half offered time-limited services, with just under half reporting that service users could re-enter without a referral. Speech and language therapy was provided in nearly all (94%) PCTs studied, but usually as an additional, stand alone, service. In nearly four out of every ten (38%), this was also time-limited, with service users being able to self-refer following discharge in only around half of cases (Bernard et al, 2010).

Playford (2011) describes vocational rehabilitation (VR) provision as ‘fragile’, citing funding difficulties and inadequate levels of trained staff, compounded by lack of clarity about who should commission VR and limited awareness of the longer term benefits it offers. Some local authority areas had restricted funding to provide or support day services that might offer VR services, but overall, they were more typically provided by condition-specific voluntary sector organisations (Bernard et al, 2010).

However provided, most of the VR services identified by Playford (2011) were for people with sudden onset conditions, such as traumatic brain injury and stroke, and provided support to help people return to an existing job or find a new one. One third of the services were 'pan-disability' in nature, and, of those that were focussed on LTNCs four were condition-specific.

While the majority of services offered long-term follow up, Playford found that most had waiting lists of between two and four months, suggesting they were working pretty much to capacity, with limited ability to respond in a crisis. Training for staff delivering vocational rehabilitation appeared to be particularly limited: nearly a third (30%) reported they had never received VR training (Playford, 2011).

The prevalence rate for epilepsy is 500/100,000 compared to only144/100,000 for MS and 200/100,000 for PD (Parker, 2010, p167).




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