References
- McDermott CJ, White K, Bushby K, Shaw PJ. Hereditary spastic paraparesis: a review of new developments. J Neurol Neurosurg Psychiatry 2000;69:150–60
- Fink JK. Hereditary spastic paraplegia: a review. Curr Neurol Neurosci Rep 2006;6:65–76
- Reid E. The hereditary spastic paraplegias. J Neurol 1999;246:995–1003
- Klimpe S, Schule R, Kassubek J, et al. Disease severity affects quality of life of hereditary spastic paraplegia patients. Eur J Neurol 2012;19:168–71
- Rygh E, Hjortdahl P. Continuous and integrated health care services in rural areas. A literature study. Rural Remote Health 2007;7:766--7
- Kulig J, Andrews M, Stewart N, et al. How do registered nurses define rurality? Aust J Rural Health 2000;16:28–32
- Jordan H, Roderick P, Martin D, Barnett S. Distance, rurality and the need for care: access to health services in South West England. Int J Health Geogr 2004;3:21--9
- Arcury T, Preisser J, Gester W, Powers J. Access to transportation and health care utilization in a rural region. J Rural Health 2006; 21:31–8
- Pateman T. Rural and urban areas: comparing lives using rural/urban classifications. Regional Trends 2011. Office of National Statistics 43; London: Stationary Office; 1--77
- Creswell J. Qualitative inquiry and research design. London: Sage Publications; 1998
- Kitzinger J. Qualitative research: introducing focus groups. BMJ 1995;311:299–302
- Kroll T, Barbour R, Harris J. Using focus groups in disability research. Qual Health Res 2007;17:690–8
- Marshall M. Sampling for qualitative research. Fam Pract 1996;13:522–5
- Morgan LD, Krueger R, Alice U. The focus group kit: planning focus groups. London: Sage Publications; 1998
- Clavering EK, McLaughlin J. Crossing multidisciplinary divides: exploring professional hierarchies and boundaries in focus groups. Qual Health Res 2007;17:400–10
- DH Long-term Conditions NSF Team. The National Service Framework for Long-term Conditions. London: Department of Health; 2005
- Stanley-Hermanns M, Engebreston J. Sailing the stormy seas: the illness experience of persons with Parkinson’s disease. The Qualitative Report 2010;15:340–69
- Greenwood N, Mackensie A. Informal caring for stroke survivors: meta-ethnographic review of qualitative literature. Maturitas 2010;66:268–76
- Courts NF, Newton AN, McNeal LJ. Husbands and wives living with multiple sclerosis. J Neurosci Nurs 2005;37:20–7
- O’Brien M, Whitehead B, Jack B, Mitchell D. The need for support services for family carers of people with motor neurone disease (MND): views of current and former family caregivers a qualitative study. Disabil Rehabil 2012;34:247–56
- Persson M, Zingmark K. Living with a person with Alzheimer’s disease: experiences related to everyday occupations. Scand J Occup Ther 2006;13:221–8
- Aspinal F, Gridley K, Bernard S, Parker G. Promoting continuity of care for people with long-term neurological conditions: the role of the neurology nurse specialist. J Adv Nurs 2012;68:2309--19
- Watt I, Franks A, Sheldon T. Health and health care of rural populations in the UK: is it better or worse? J Epidemiol Commun H 1994;48:16–21
- Hoffmann T, Cantoni N. Occupational therapy services for adult neurological clients in Queensland and therapists' use of telehealth to provide services. Aust Occup Ther J 2008;55:239–48
- Whitten PS, Mair FS, Haycox A, et al. A systematic review of cost effectiveness studies of telemedicine interventions. BMJ 2002;324:1434–7
- Nutt S, Limb L. Survey of patients' and families' experiences of rare diseases reinforces calls for a rare disease strategy. Social Care and Neurodisability 2011;2:195–9
- Mackensie C. On bodily autonomy. In: Toombs K, ed. Handbook of phenomenology and medicine. The Netherlands: Kluwer Academic Publishers; 2001:420--2
- Lau-Walker M, Thompson A. Self-management in long-term health conditions-a complex concept poorly understood and applied? Patient Educ Couns 2009;75:290–2
- Thompson A, Jarrett L, Lockley L, et al. Clinical management of spasticity. J Neurol Neurosurg Psychiatry 2005;76:459–63
- Wilkie K, Shiels J, Bulley C, Salisbury L. Functional electrical stimulation (FES) impacted on important aspects of my life – a qualitative exploration of chronic stroke patients and carers perceptions of FES in the management of dropped foot. Physiother Theory Pract 2012;28:1–9
- Nolan M. Relationship-centred care: towards a new model of rehabilitation. Br J Ther Rehabil 2002;9:472–7
- Boeije HR, Duijnstee MSH. Continuation of care giving among partners who give total care to spouses with multiple sclerosis. Health Soc Care Comm 2003;11:242–52
- Grose J, Frost J, Richardson J, Skirton H. Using meta-ethnography to understand the impact of cognitive impairment on carers of people with cognitive impairment. Nursing Health Sci 2013;15:113–23
- National Institute for Clinical Excellence/National Collaborating Centre for Chronic Conditions NICE. Multiple sclerosis: National clinical guidelines for diagnosis and management in primary and secondary care. London: Stationery Office; 2004
- Lancet Editorial. Rare neurological diseases: a united approach is needed. The Lancet (Neurology) 2011;10:109--10