Search results

This paper aims to report results from a national survey of primary care trusts (PCTs) that explored the strategic, organisational and practice context of services for people with long‐term neurological conditions (LTNCs). It seeks to provide benchmarks for integrated service provision and to discuss possible reasons for the variability in progress.

Earlier phases of the research identified three models of care that promoted continuity of care for people with LTNCs: community interdisciplinary neurological rehabilitation teams, nurse specialists and pro‐active day opportunities. Based on this evidence, a benchmarking questionnaire was developed and a telephone survey of PCTs in England undertaken in 2009.

The survey found that the prevalence of models of good practice varied widely across and within PCT areas. Strategic support and commissioning arrangements were also variable. A little over half of responding PCTs had completed a joint strategic needs assessment (JSNA) that included a reference to LTNCs and a quarter of PCTs had no joint commissioning arrangements in place for LTNCs. The complex interplay between strategy, organisational structures and models of delivery, in a context of competing priorities, may account for this variation and patchy progress.

Service provision for people with LTNCs is an under‐researched area, despite having major implications for long‐term care and support. The paper will be valuable to policy makers and commissioners in benchmarking organisational activity and models of good practice for integrated services.

This paper seeks to report key findings of a study, whose purpose was to: understand what helps or hinders the commissioning and provision of integrated services for people with long‐term neurological conditions (LTNCs); identify models of best practice from the perspectives of people with LTNCs and the professionals who work with them; and develop a benchmarking system to assess the extent to which these models are available in England.

The research had three main components: a rapid systematic literature review of evidence; in‐depth case studies of six neurology “service systems”; and a survey of all English PCTs to audit progress towards implementation of the National Service Framework (NSF) for LTNCs.

A number of elements that contribute to the experience of continuity and three service models that incorporate these elements were identified: community interdisciplinary neurological rehabilitation teams; nurse specialists and proactive, holistic day opportunities services. The survey results reinforced many of the case study findings, particularly around the varying levels of service available depending on diagnosis and location, and problems of access even where high‐quality services existed. The paper concludes that the systematic approach to delivering treatment and care for people with LTNCs envisaged in the NSF has not yet been achieved.

This study uses a mix of methods to assess progress towards national service improvement, based on evidence from people with LTNCs and those who work with them. As such, it provides a comprehensive benchmark at a critical point in the implementation of the NSF for LTNCs.

Neurological disease and neurodisability cause significant disruption to families, who come under substantial pressure to adapt to changes in the condition over time. Family members are often disadvantaged in their coping because of infrequent access to professional consultations, and by default carers tend to neglect their own needs. One threat to relationships can be a pull towards acting as the main carer, even carrying out personal care tasks, especially if the family unit resists extending its boundaries to include paid carers. We discuss the distinct challenges that families are faced with at different stages of disease progression (emerging, diagnostic, longterm adaptation, crisis, chronic, and terminal) for one particular condition (multiple sclerosis or MS). A number of recommendations are made for supporting family members in the form of a ‘family care pathway’ for neurology and neurodisability.

The purpose of this paper is to determine if issues relevant to multidisciplinary rehabilitation care from the perspective of the patient and caregiver can be addressed utilising the International Classification of Functioning, Disability and Health (ICF) framework; also to identify gaps in evidence and service provision to optimise clinical care.

Participants with motor neurone disease (MND) (n=44) and their caregivers (n=37) were recruited from a tertiary MND clinic. Cross‐sectional predominantly qualitative methodology was used to explore the perspectives of MND patients and their caregivers on disability and service gaps. Their disability experience and relevant environmental factors were then mapped onto the ICF framework. Personal factors were described. The impact of MND on caregivers was also described.

There were significant gaps in MND care. In particular, the need for coordinated care by neurology, rehabilitation and palliative care services (“neuropalliative rehabilitation” model) was highlighted. The ICF framework adequately incorporated patient‐and caregiver‐ reported disability in MND.

This is the first review that the authors can identify, that lays the foundation for development of an ICF “Core set” (expert‐selected ICF categories that should be addressed in multidisciplinary care settings) for MND, which could improve consensus of care and communication amongst treating clinicians.

The objective of this paper was to systematically review published studies to determine if disability limits access to health care and to attempt to identify what body functions, structures and activities and participation, as well as contextual factors (environmental and personal factors), interact with the health condition to limit this access. The AMED, CINAHL, EMBASE, Medline and psychINFO databases were searched for original study articles in English, dating from 1974 to 2008. Review articles and expert opinion were excluded. Each study had two independent reviews by either a general practitioner or specialist in rehabilitation medicine. Each study was critically appraised according to the National Service Framework for Long‐term Conditions (Department of Health, 2005a) methodology and recorded on standardised data extraction sheets. Studies of poor quality were excluded. Sixty studies were included. No randomised controlled trials were identified. Studies broadly fell into the following three main groups: database studies (n=27), quantitative surveys (n=20) and qualitative interviews (n=13). Disabled people are restricted in accessing health care and report less satisfaction with their medical care. Many of the identified studies were from the United States (US) and based on subjective reporting. More objective evidence is needed, especially in the UK, to clarify the true level of access to health care in people with disabilities. The complex, interdependent factors in providing health care to disabled people require complex solutions.

The purpose of this paper is to outline a work‐based, professional education series of workshops, focusing on issues of sex and sexuality training for health and social care professionals who work with adults with a moderate to severe acquired brain injury. The series of workshops were conducted by a trained psychosexual therapist and couples counsellor from Headway Brain Injury Association, and held at the Royal Hospital for Neuro‐disability in 2009 to raise health and social care professionals' awareness about sexuality issues for this patient population. A case study of the series is presented, which we hope will add to the discourse about the sexual needs of people with a moderate to severe acquired brain injury. Overall, participants were positive about the education and learning achieved within the workshop series.

The current focus on psychological well‐being and the treatment of people experiencing common mental disorder in primary care is of interest to health professionals and economists alike (Centre for Economic Performance Mental Health Policy Group, 2006). This brings with it an important opportunity to consider how services for people living with long term medical conditions may benefit from developments in widening access to psychological therapies. The National Service Framework for Longterm Conditions (DoH, 2005a) aims to improve the quality of life for people living with chronic medical conditions. Further to this, NICE Guidelines for the Management of Chronic Obstructive Pulmonary Disease (COPD) (NICE, 2004a) specifically focuses attention on quality of life issues for COPD sufferers and the influence of co‐morbid mental disorder on the ability of individuals to optimise selfmanagement of their condition. By examining issues relating to co‐morbidity of common mental disorders within the long‐term condition of COPD this paper concerns itself with how the agenda for widening access to psychological therapies delivered through a stepped model of care and the introduction of new mental health workforce roles such as community matrons, case managers and primary care graduate mental health workers (PCGMHWs) provides an opportunity for primary care services to integrate mental health care into chronic disease management for COPD, which in turn may provide a model for the development of services for other long‐term medical conditions.

The purpose of this paper is to establish the value placed on the facets that contribute to a meaningful leisure occupation for the residents of a residential care facility by the staff that care for them.

This was a service evaluation using a self-reported questionnaire, completed by six Activity Co-ordinators from the home of 158 individuals with a wide range of neuropalliative conditions.

The cultural/historical components, the built and social environment, learning, life satisfaction and goal orientation were reported as the least valued facets, which make up a leisure occupation. The staff did, however; value the sense of health and capability, purpose, the feeling of being fully human and the sense of belonging that comes about through leisure. They also valued preventing boredom, opportunities for self-expression, creativity, achievement, and control. Additionally they valued opportunities to gain a clear sense of the rhythm of life, of self-identity, choice of occupation, and engagement in the occupation.

The findings highlight a variance between the perceptions of staff members who deal with the day-to-day leisure opportunities and decisions of the residents, and the literature of occupational science about what makes an occupation meaningful, and therefore is worthy of consideration when planning a leisure occupation.

Personalised care requires consideration of the individual's cultural and historical background, the environment surrounding the occupation, opportunities for social interaction, individual learning, life satisfaction, and goal orientation when organising leisure opportunities. These facets are stressed because the participants undervalued them.

The context of this paper is a subset of individuals with neurological disabilities who experience profound disabilities, and the attitudes of staff to their leisure lifestyle.

There is now a vast amount of available information, research and policy on the transition of young people with learning disabilities to adulthood. These sources are informed by different professional philosophies and practices, resulting in a heterogeneous mass of data that can be confusing, contradictory and repetitive. In this review we provide an overview of recent publications about services for young people with learning disabilities at the time of transition, with particular focus on those with mental disorders including neurodevelopment disorders and/or challenging behaviour. We discuss their relevance to good practice and the implications for the future development of services for people with learning disabilities in the UK. We argue that, despite the qualitative differences between the experience of transition to adulthood for young people with learning disabilities and that of other young people, the principles of service provision remain the same. Developments in research and clinical practice in this field ought to reflect good practice, as well as embracing new methodologies, and benefit from advances in adolescents without learning disabilities.