Neurological Rehabilitation Service Research Articles

La gramática corporal y sus significados: una etnografía del contexto clínico sobre el lenguaje y la afasia motora en un hospital de la Ciudad de México

Abstract This text is the result of an ethnographic research conducted in the neurological rehabilitation service at the Center for Mental and Neurological Health Care in Mexico City. This work focuses its problematic on elucidating how the body language of people with motor aphasia is reconstructed and what senses they generate. The analysis of the collected information led us to identify that language rehabilitation reconstructs a body grammar and uses the ability to narrate in order to restore language and communication. In this sense, we follow Goffman’s notion of strip of activity, Csordas’ embodiment and Bakhtin’s polyphony, in order to understand the discursive construction of language that is introjected into the body and reproduced during clinical interaction. The employed methodology was an ethnography of the clinical context using narratives as a suitable tool to describe the meaning constructed between therapists and people affected with motor aphasia.

Body grammar and its meanings: an ethnography of the clinical context on language, and motor aphasia in a hospital in Mexico City.

This text is the result of an ethnographic research conducted in the neurological rehabilitation service at the Center for Mental and Neurological Health Care in Mexico City. This work focuses its problematic on elucidating how the body language of people with motor aphasia is reconstructed and what senses they generate. The analysis of the collected information led us to identify that language rehabilitation reconstructs a body grammar and uses the ability to narrate in order to restore language and communication. In this sense, we follow Goffman's notion of strip of activity, Csordas' embodiment and Bakhtin's polyphony, in order to understand the discursive construction of language that is introjected into the body and reproduced during clinical interaction. The employed methodology was an ethnography of the clinical context using narratives as a suitable tool to describe the meaning constructed between therapists and people affected with motor aphasia.

The impact of stroke, cognitive function and post-stroke cognitive impairment (PSCI) on healthcare utilisation in Ireland: a cross-sectional nationally representative study

BackgroundCognitive impairment after stroke is associated with poorer health outcomes and increased need for long-term care. The aim of this study was to determine the impact of stroke, cognitive function and post-stroke cognitive impairment (PSCI) on healthcare utilisation in older adults in Ireland.MethodsThis cross-sectional study involved secondary data analysis of 8,175 community-dwelling adults (50 + years), from wave 1 of The Irish Longitudinal Study on Ageing (TILDA). Participants who had been diagnosed with stroke by a doctor were identified through self-report in wave 1. Cognitive function was measured using the Montreal Cognitive Assessment (MoCA). The main outcome of the study was healthcare utilisation, including General Practitioner (GP) visits, emergency department visits, outpatient clinic visits, number of nights admitted to hospital, and use of rehabilitation services. The data were analysed using multivariate adjusted negative binomial regression and logistic regression. Incidence-rate ratios (IRR), odds ratios (OR) and 95% confidence intervals (CI) are presented.ResultsThe adjusted regression analyses were based on 5,859 participants who completed a cognitive assessment. After adjusting for demographic and clinical covariates, stroke was independently associated with an increase in GP visits [IRR (95% CI): 1.27 (1.07, 1.50)], and outpatient service utilisation [IRR: 1.49 (1.05, 2.12)]. Although participants with poor cognitive function also visited the GP more frequently than participants with normal cognitive function [IRR: 1.07 (1.04, 1.09)], utilisation of outpatient services was lower in this population [IRR: 0.92 (0.88, 0.97)]. PSCI was also associated with a significant decrease in outpatient service utilisation [IRR: 0.75 (0.57, 0.99)].ConclusionsStroke was associated with higher utilisation of GP and outpatient services. While poor cognitive function was also associated with more frequent GP visits, outpatient service utilisation was lower in participants with poor cognitive function, indicating that cognitive impairment may be a barrier to outpatient care. In Ireland, the lack of appropriate neurological or cognitive rehabilitation services appears to result in significant unaddressed need among individuals with cognitive impairment, regardless of stroke status.

Expert consensus for in-hospital neurorehabilitation during the COVID-19 pandemic in low- and middle-income countries

Background: People with neurological dysfunction have been significantly affected by the ongoing coronavirus disease 2019 (COVID-19) crisis in receiving adequate and quality rehabilitation services. There are no clear guidelines or recommendations for rehabilitation providers in dealing with patients with neurological dysfunction during a pandemic situation especially in low- and middle-income countries. The objective of this paper was to develop consensus-based expert recommendations for in-hospital based neurorehabilitation during the COVID-19 pandemic for low- and middle-income countries based on available evidence. Methods: A group of experts in neurorehabilitation consisting of neurologists, physiotherapists and occupational therapists were identified for the consensus groups. A scoping review was conducted to identify existing evidence and recommendations for neurorehabilitation during COVID-19. Specific statements with level 2b evidence from studies identified were developed. These statements were circulated to 13 experts for consensus. The statements that received ≥80% agreement were grouped in different themes and the recommendations were developed. Results: 75 statements for expert consensus were generated. 72 statements received consensus from 13 experts. These statements were thematically grouped as recommendations for neurorehabilitation service providers, patients, formal and informal caregivers of affected individuals, rehabilitation service organizations, and administrators. Conclusions: The development of this consensus statement is of fundamental significance to neurological rehabilitation service providers and people living with neurological disabilities. It is crucial that governments, health systems, clinicians and stakeholders involved in upholding the standard of neurorehabilitation practice in low- and middle-income countries consider conversion of the consensus statement to minimum standard requirements within the context of the pandemic as well as for the future.

Orthotic care needs in a cohort of neurological rehabilitation inpatients

Aim Orthotic management is frequently part of the rehabilitation of various neurological conditions in adults such as stroke, peripheral neuropathies, spinal cord injuries and multiple sclerosis. Despite this, there are limited data available on the implementation of orthotic care in practice. The primary aim of this study is to establish the proportion of inpatients in a mixed neurorehabilitation cohort which receive orthotic assessment and treatment. The secondary aim was to document the overall care pathway. Methods Existing data were reviewed retrospectively. Data gathered included patient demographics such as age, gender and diagnosis, type of orthoses prescribed, number of orthotic treatment sessions required and outcome measures used. The paper was prepared in accordance with the STROBE statement for observational studies. Results During a 6 month period, 54 patients were admitted as inpatients. Of these, 25 (46%) were referred to the orthotic service for assessment, with 23 (43%) receiving a lower limb orthosis and 19 (35%) subsequently being discharged using either an ankle-foot orthosis or knee-ankle-foot orthosis. The conditions most commonly seen were stroke (40%), incomplete spinal cord injuries (28%) and peripheral neuropathies (16%). Significant improvements were recorded at discharge using the Functional Independence Measure (FIM) and Functional Assessment Measure (FAM). Various aspects of the orthotic care process are described. Conclusions This study suggests that orthotic treatment is needed with high frequency in a mixed inpatient neurorehabilitation cohort. In terms of service planning, these data support existing the recommendation that neurological rehabilitation centres should have good access to orthotic services. Implications for rehabilitation Custom orthoses such as AFOs and KAFOs are frequently needed by neurological rehabilitation inpatients. Orthoses may facilitate standing and walking at an earlier stage during rehabilitation. Those responsible for neurological rehabilitation services should ensure appropriate access to orthotic services.

Healthcare professionals’ experiences of working with patients with MND: A qualitative study

This paper describes a service evaluation that explored the experiences of healthcare professionals providing neurological rehabilitation and support to patients with motor neurone disease (MND). This formed part of a wider service development initiative which focused on improving resilience and wellbeing for staff working within a neurological rehabilitation service. Based on the findings, recommendations are made on how to promote and facilitate staff resilience when working with patients who have MND.

Comprehensive Stroke Center Certification Series: Setting the Vision

The road to Comprehensive Stroke Center (CSC) certification is challenging and requires full integration of neurological, neurosurgical, neurointerventional, and neurocritical care and rehabilitation services across the entire continuum of care. To successfully achieve this level of certification, centers must coordinate significant resources and services into an organized program. This paper is the first in a three-part series outlining common pitfalls facing many organizations during their journey to initial CSC certification and re-certification and offers a roadmap and pearls for success on this journey. Setting the vision for certification is a key first step in the certification process. This includes fully understanding the certification standards, requirements, and supporting documents. Program leadership must then conduct a thorough gap analysis and build a business plan to support the program as it transitions to a CSC. These key steps should inform the timeline for certification application.

Feasibility and Utility of Tele-Neurorehabilitation Service in India: Experience from a Quaternary Center.

Background:Neurological rehabilitation service in developing countries like India is a great challenge in view of limited resources and manpower. Currently, neurological rehabilitation with a multidisciplinary team is limited to a few major cities in the country. Tele-neurorehabilitation (TNR) is considered as an alternative and innovative approach in health care. It connects the needy patients with the health-care providers with minimum inconvenience and yields cost-effective health care.Aim:The aim of this study was to study the socioclinical parameters, feasibility, and utility of TNR services in India.Methodology:A retrospective file review of TNR consultations provided through Telemedicine Center at a quaternary hospital-based research center in south India between August 2012 and January 2016.Results:A total of 37 consultations were provided to the patients belonging to four districts of Karnataka. The mean age of the patients was 34.7 (±19.5) years, 23 (62.1%) were aged between 19 and 60 years, and 31 (83.8%) were male. Thirty-one patients (83.8%) had central nervous system-related disorders such as stroke, cerebral palsy, and tubercular meningitis with sequelae or neuromuscular disorders such as Guillain–Barre Syndrome and Duchenne muscular dystrophy. Twelve patients (32.4%) were advised to consult higher centers in the vicinity, and the rest was referred to the district hospital.Conclusion:The findings suggest that TNR services are feasible, effective, and less resource intensive in delivering quality telemedicine care in India. More clinical studies are required to elucidate its full utility at different levels and in different parts of the country.

The role of subjective cognitive complaints and depressive symptoms in social re-integration following stroke: a mediation explanation in a cross-sectional sample

Background: For long-term stroke survivors, objective neuropsychological impairments and subjective cognitive difficulties are common, and may contribute to ongoing difficulties in community reintegration. However, subjective cognitive complaints have been as much associated with low mood as with actual cognitive performance.Objective: The objective of our study was to investigate the extent to which subjective cognitive complaints predicted community reintegration following a stroke, and whether this relationship would be mediated by emotional status.Methods: Using a cross-sectional design, patients with a primary diagnosis of stroke (n = 102; age range 25–89 years) were recruited from the register of a neurological rehabilitation service if they were at least 6 months post-stroke and had been discharged home following the stroke. Exclusions included history of dementia, co-morbid psychiatric or neurological disorder, or significant aphasia. Assessments included the Subjective Cognitive Complaints Questionnaire, the Community Integration Questionnaire, and the Depression Anxiety and Stress Scale.Results: Subjective cognitive complaints were common, with moderate to high levels of complaint most frequent for working memory (58.9%), and information processing speed (53%). Subjective cognitive complaints were significantly associated with social integration (r = −.23, p < .05). However, examination of relationships using statistical mediation revealed that depressive symptoms fully mediated the relationship between subjective cognitive complaints and social integration.Conclusions: Subjective cognitive complaints are common in long-term outcome following stroke and predict difficulty in community reintegration. However, this relationship is mediated by variation in emotional status. Therefore, addressing cognitive complaints through cognitive rehabilitation programs that include components to improve mood (for example, building self-efficacy or confidence) may also improve community reintegration post-stroke.

Botulinum toxin prescription in the treatment of spasticity in the neurological rehabilitation service: 2012 to 2015 assessment

Botulinum toxins are often prescribed in aftercare and neurological rehabilitation services. In our hospital, they are exponentially used in the treatment of spasticity. The objective of this study is to make an assessment of their use over the period 2012–2015. All the botulinum toxin prescriptions are followed by the chemists. A traceability form allows to collect information about the patient, the prescriber, the medicine and its dose, the cost, and the indication. All these data are saved in an Excel file. The data from 2012 to 215 concerning the spasticity have been extracted and analysed. Speaking about figures, botulinum toxins represented an amount of €118,020 excluding tax in 2012 to €224,239 in 2015. The number of toxin injection sessions went from 435 (1.61 sessions per patient per year) to 643 (1.86 sessions per patient per year). The average dose in international unit (IU) for the treatment of the upper and/or upper limb spasticity increased during this period, going from 164 to 214 IU for Botox and from 595 to 793 IU for Dysport. In 2015, the treatment costs are quite similar for both molecules, with an average injection session cost of €300. The number of patients for whom the cost exceeds the amount supported by the hospital doubled over 3 years (from 20 to 42%), in relation to the increase either of the doses injected per muscle or of the number of treated muscles. This follow-up shows the complexity of the financial support of spasticity, and also of the economic and clinical monitoring of botulinum toxin administration. This must be carried on and refined, especially concerning the indication follow- up in association with the doctors (muscles treated per session, regulation compliance, treatment average costs)

Impact of energetic resonance by cutaneous stimulation sessions on the patient medicinal care: A pilot study in an aftercare and rehabilitation service

The patients in the neurological rehabilitation service are often in pain and anxious. To take care of them, some alternatives to medicine are being tested, especially to limit their side effects. A project of an energetic resonance by cutaneous stimulation service development, based on Chinese medicine, was started in 2013. It is about getting the feedback of the first patients taken care of. Energetic resonance by cutaneous stimulation is a multiprofessional project, associating doctors, chemists, health executives, and nursing staff. Four sessions are planned by the procedure. Pain is quantified thanks to the Visual Analog Scale (VAS); as for anxiety, it is quantified thanks to the Covi anxiety scale. During each session, data are saved on an Excel file like the session date and length, anxiety before and after, pain before and after, feeling of the patient. The chemist service follows constantly the painkiller, tranquilliser and antiemetic consumption, and this from a month before the first session to a month following the last one, thanks to the administrations indicated on Cristalnet software. Three nurses were trained in the service. Eight patients benefited from this program: 5 for pain, 1 for anxiety, 1 for insomnia and 1 for nauseas and vomitings. On average, each patient benefited from 3.9 sessions of about 33 minutes (± 7 minutes). When the patient is in pain, the average VAS reduction is of about −2.9 ± 2.2. When the patient is anxious at the beginning of the session, the average reduction of anxiety (on the covi scale) is about −2.9 ± 2.3. The patients’ feedback is positive and the reduction of medicinal treatment is noticeable. For example, paracetamol use decreases by 1000 mg ± 500. Despite the limits of the study (observation study without any control group), these results are encouraging. Energetic resonance by cutaneous stimulation seems to be beneficial for the patient even if it is difficult to assess objectively what is linked to the technique itself, to touch, to the care and support given to the patient and/or to the spontaneous evolution of the patient's state of health.

Patient engagement and satisfaction with goal planning: Impact on outcome from rehabilitation

Aim: To examine the relationship between patient/family engagement in goal planning, satisfaction with the goal setting process and associated goal attainment and functional gains during rehabilitation. Method: A prospective cohort analysis of consecutively completed episodes for patients discharged over a 1-year period (January–December 2013) in a specialist neurological rehabilitation service in the UK. Participants were adults (n=83) with neurological disabilities (mean±SD age: 42.8 ±15.0 years; programme length: 98 ± 47 days; male to female ratio: 69 : 31; diagnosis: brain injury (n=75, 90%), spinal cord injury (n=5, 6%), other neurological conditions (n=3, 4%)). The measures used were six-point visual analogue scales to rate goal engagement and goal satisfaction, Goal Attainment Scaling (GAS) and the UK Functional Assessment Measure (UK FIM+FAM). Results: Significant improvements were seen between admission and discharge for patient goal engagement (Mann-Whitney z=–2.2, p=0.027) and satisfaction (z=–...

Measuring complexity in neurological rehabilitation: the Oxford Case Complexity Assessment Measure (OCCAM)

Objective: To investigate validity and reliability of a new measure of case complexity, the Oxford Case Complexity Assessment Measure (OCCAM). Design: Data collection on inpatients and outpatients attending for rehabilitation. In subsets, repeat assessments were undertaken two weeks apart, by clinicians unaware of initial data, and on admission and on discharge from inpatient rehabilitation. Setting: Specialist neurological rehabilitation service. Subjects: Patients receiving rehabilitation after acute onset disability. Interventions: Assessment by clinical staff as part of routine care. Measures: OCCAM, the INTERMED, Rehabilitation Complexity Scale – Extended (RCS-E), clinical judgement of complexity (0–10 numerical rating scale), length of stay and discharge destination (for inpatients). Results: For the OCCAM, the Cronbach’s α coefficient was 0.69 and item-total correlations were moderate to high except for pathology and time. The correlation coefficients with OCCAM were: INTERMED (ρ = 0.694), RCS-E (ρ = 0.736), and team judgement (ρ = 0.796). Inter-rater agreement was excellent (Weighted κ = 0.95). Correlation between admission and discharge scores was ρ = 0.917. Test–retest agreement was good (intraclass correlation coefficient 0.86). Higher mean admission scores were associated with prolonged stays (38.6 ± 12.2 versus 32.9 ± 13.7, P = 0.04) and failure to return home (48.0 ± 13.7 versus mean 32.1 ± 10.7, P < 0.001). The optimal cut-off of OCCAM to detect patients not discharged home was ≥ 34, with corresponding sensitivity and specificity of 84.6% and 62.8%, respectively. Conclusions: This preliminary evidence suggests that the OCCAM may measure case complexity reliably, and may predict rehabilitation resource used and outcome. Further research is warranted.

Using the UKROC dataset to make the case for resources to improve cost-efficiency in neurological rehabilitation

Purpose: A key challenge for providers and commissioners of rehabilitation services is to find optimal balance between service costs and outcomes. This article presents a “real-lifeâ application of the UK Rehabilitation Outcomes Collaborative (UKROC) dataset. We undertook a comparative cohort analysis of case-episode data (n = 173) from two specialist neurological rehabilitation units (A and B), to compare the cost-efficiency of two service models. Key messages: (i) Demographics, casemix and levels of functional dependency on admission and discharge were broadly similar for the two units. (ii) The mean length of stay for Unit A was 1.5 times longer than Unit B, which had 85% higher levels of therapy staffing in relation to occupied bed days so despite higher bed-day costs, Unit B was 20% more cost-efficient overall, for similar gain. (iii) Following analysis, engagement with service commissioners led to successful negotiation of a business plan for service reconfiguration with increased staffing levels for Unit A and further development of local community rehabilitation services. Conclusion: (i) Lower front-end service costs do not always signify optimal cost-efficiency. (ii) Analysis of routinely collected clinical data can be used to engage commissioners and to make the case for resources to maximise efficiency and improve patient care.Implications for RehabilitationA key challenge for the provision of rehabilitation services is to strike a cost-effective balance between outcome and service cost, particularly for highly complex cases.This article presents a “real-lifeâ application of the UK Rehabilitation Outcomes Collaborative (UKROC) dataset from two tertiary neurological rehabilitation services to demonstrate how the dataset may be used to compare the cost-efficiency of different service models.Analysis of routinely collected clinical data can be used to engage commissioners and to make the case for resources to maximize efficiency and improve patient care.

Rehabilitation for multiple sclerosis: bridging the gaps

AbstractThere is increasing evidence that neuropsychological rehabilitation reduces cognitive symptoms in multiple sclerosis (MS). However, a national report by the Royal College of Physicians suggests that many MS patients are still experiencing difficulty accessing neurological rehabilitation services.

Implementing a person- centred model of service delivery and practice in neurological rehabilitation: Theoretical and practical considerations

p.MsoNormal, li.MsoNormal, div.MsoNormal { margin: 0cm 0cm 0.0001pt; font-size: 12pt; font-family: "Times New Roman"; }div.Section1 { page: Section1; } Abstract The purpose of this paper is to discuss the theoretical and practical implications inherent in the decision, made by the Community Neurological Rehabilitation Service (CNRS), and endorsed by Walsall Community Health, to adopt a person–centred model of service delivery and clinical practice. The CNRS provides an interdisciplinary service to patients with a range of long-term neurological conditions in the community. A rigorous review of the previous rehabilitation services was conducted in 2007 and the theoretical influences, namely the biomedical and biopsychosocial models of disability, inherent in aspects of service delivery were critiqued. This review resulted in the adoption, at both client and organisational levels, of a person-centred approach to clinical practice. Cott, Teare, McGilton &amp; Linecker (2006) proposed seven domains as indicators of client-centred rehabilitation and this paper uses this domains to illustrate how person-centred practice has been implemented by the CNRS. The domains are: participation in decision making and goal setting, client-centred education, evaluation of outcomes from the client’s perspective, family involvement, emotional support, coordination and continuity, and physical comfort. The challenges experienced by the interdisciplinary team and future recommendations and research are discussed. (186 words)

Implementing a person-centred model of service delivery and practice in neurological rehabilitation: theoretical and practical considerations

The purpose of this paper is to discuss the theoretical and practical implications inherent in the decision, made by the Community Neurological Rehabilitation Service (CNRS) and endorsed by Walsall Community Health, Walsall Healthcare Trust, UK, to adopt a person-centred model of service delivery and clinical practice. The CNRS provides an inter-disciplinary service to patients with a range of long-term neurological conditions in the community. A rigorous review of the previous rehabilitation services was conducted in 2007 and the theoretical influences, namely the biomedical and biopsychosocial models of disability, inherent in aspects of service delivery were critiqued. This review resulted in the adoption, at both client and organisational levels, of a person-centred approach to clinical practice. Cott, Teare, McGilton and Linecker (2006) proposed seven domains as indicators of client-centred rehabilitation and this paper uses these domains to illustrate how person-centred practice has been implemented by the CNRS. The domains are: participation in decision-making and goal setting, client-centred education, evaluation of outcomes from the client’s perspective, family involvement, emotional support, co-ordination and continuity and physical comfort. The challenges experienced by the inter-disciplinary team and future recommendations and research are discussed.

Botulinum Toxin in the management of hitchhiker's toe

Hyperextension of the extensor hallucis longus (EHL) muscle is a well recognised disabling sequel of either pyramidal or extrapyramidal lesions causing what is known as striated or hitchhiker's toe. Surgery was the only effective strategy to manage EHL hyperextension before botulinum toxin's use to manage muscular dystonia and spasticity became widely popular. A multicentre retrospective study. A standard proforma was sent to specialists in neurological rehabilitation dealing routinely with this problem. The data was analysed using descriptive statistics. Four consultants and two trainees representing five separate neurological rehabilitation services agreed to participate in the study. Full data was available from the 29 proformas completed. The subjects were 15 females with an age range between 20 and 78 years (mean 58.7). Stroke was the primary diagnosis in 18 subjects. Four subjects had bilateral involvement. 16 subjects had either an associated foot drop or equino varus deformity. Dysport® was used in 15 subjects with an average dose of 170 units per injection and Botox® in the other 14 with an average dose of 65 units. The treatment was effective in 24 subjects (83%). All patients receiving Dysport® responded to the treatment. Whilst 5 Botox® treated patients failed to respond to it (35% failure rate). Most of the non respondents seemed to receive insufficient doses of Botox® (below 60 units). Surgical management was successful in 3 out of the 5 non respondent cases. Botilinum Toxin is an effective and safe method to manage hitchhicker's toe. In our study the conversion ratio between Dysport® and Botox® was 2.5:1. Third of the patients receiving Botox® failed to respond to the treatment most probably due to insufficient doses used.

The Rehabilitation Complexity Scale: a simple, practical tool to identify ‘complex specialised' services in neurological rehabilitation

New commissioning arrangements in the NHS require the identification of 'complex specialised' (CS) services, as distinct from more 'general' or 'district specialist' (DS) rehabilitation services, to determine differential cost-tariffs. In this cross-sectional postal survey representing 49 inpatient neurological rehabilitation services in the UK, no clear service characteristics that distinguished CS services (n = 20) from DS services (n = 29) could be identified. On the other hand, the Rehabilitation Complexity Scale (RCS) demonstrated clear differences between the two types of service, in terms of the complexity of case mix and of the rehabilitation inputs provided. District specialist services reported a median RCS score of 7 (interquartile range (IQR) 6-8), whereas CS services reported higher scores (median 9 (IQR 7-11)) (Mann-Whitney z = -9.3, p < 0.0001). Carrying a caseload in which 50% of patients had total RCS scores > or = 9 appeared to be a sensitive and specific indicator of a CS service. This study represents the first reported use of the RCS. Feedback regarding the utility of the tool was generally favourable, although other more detailed instruments are likely to be required to distinguish complexity at the very top end of the scale. As NHS services tackle the challenges posed by Payment by Results for management of patients with complex needs, it is suggested that this approach may have application in other fields of clinical practice.

Mind the gap: rethinking community neurological rehabilitation services

Recognition that there was a lack of knowledge about what services existed for adults aged 18– 65 years with an acquired neurological condition in North Cumbria, and how they were accessed and co-ordinated, led to a project to identify community rehabilitation provision and explore potential service models. Interviews were undertaken with service providers, and focus groups, interviews and a questionnaire were undertaken with services users and carers. The five areas of concern to emerge from a thematic analysis of the data related to service provision; respite care and day time occupation, transport and geography, co-ordination of services, and information. There were differences in perspectives and priorities. Having one point of contact for access to all services emerged as the preferred model, although this would not address the gaps in service provision. Despite the recognition that the National Service Framework for Long-term Conditions (Department of Health (DH), 2005b) has promoted service development for the target group, there is still a need to work towards greater coherence in service provision across a plurality of providers.