Service delivery for people with hereditary spastic paraparesis living in the South West of England

Abstract

Purpose: Hereditary Spastic Paraplegia (HSP) is an inherited nervous system disorder characterized by development of leg weakness, spasms and stiffness. While generally acknowledged that health and social care services can minimise symptoms and improve quality of life, there is a lack of research exploring this from the perspective of people affected by HSP. This qualitative study explored the users and providers experience of using rural services. Method: Focus groups and interviews were undertaken of people with HSP (n = 14), carers (n = 6) and professionals (n = 12), to describe their experience of service provision and to suggest improvements for care. These were taped, transcribed and analysed. Results: Four themes emerged: (1) Diagnosis, symptoms and finding support; (2) Therapy, treatment and the delivery of care; (3) Managing the disease together; and (4) The way forward. Conclusions: Rehabilitation and support for self-management is valued by those affected with HSP throughout the disease trajectory from diagnosis onwards. Key to this is the development of a partnership approach which includes carers. Single point, well-informed, gatekeepers may enhance the coordination and delivery of care in rural areas. These findings underline current guidance promoting a holistic approach for people with neurological conditions.

Implications for Rehabilitation

• People with HSP see as a high priority the need for additional neuro-physiotherapy services and emotional support services.

• Single point, well-informed, gatekeepers are essential to coordinate care, especially with rare diseases.

• Health professionals need more education and training about the disease process and its consequences for people affected by HSP, including the carer burden.

• People with HSP require better self-management advice, information and support.

• Carers
• health services
• hereditary spastic paraparesis
• neurological conditions
• rural

Acknowledgements

We thank all those who gave up their time to participate in this research. We also thank Dr Natalie Lewis for acting as observer in all the focus groups.