PONM10 Motor neurone disease. Experience and expectations of patients and care givers. Issue 11 (22nd October 2010)

• Record Type: Journal Article
• Authors: Gutiez, M Tanaka; Nevin, B; Stewart, J; Jarrett, L; Weatherby, S J M
• Is Part Of: Journal of neurology, neurosurgery and psychiatry. Volume 81:Issue 11(2010)
• Page Start: e63
• Page End: e63
• Publication Date: 2010-10-22
• Subjects: Neurology -- Periodicals; Nervous system -- Surgery -- Periodicals; Psychiatry -- Periodicals; 616.8
• DOI: 10.1136/jnnp.2010.226340.183
• Languages: English
• ISSNs: 0022-3050

Abstract

Abstract : Introduction: Working with the Motor Neurone Disease Association (MNDA) a care network approach is being developed to improve services across Devon and Cornwall. To assist, a baseline questionnaire study was performed to understand the experience and expectations of patients and care providers. Methods: 3 groups were examined across the region; the person with MND (PwMND), neurologists and multidisciplinary team members (MDT). Results: Responses were received from 32 PwMND (30% response rate), 13 neurologists, 6 MDT. In many cases PwMND filled out the questionnaire with assistance from their carers. 93% of PwMND found contact with the MNDA useful. There were discrepancies between these groups in a number of domains. (i) Neurologists and MDT members appeared to underestimate the importance of PwMNDs experience around diagnosis (40% of PwMND comments vs 0% of neurologists and MDT), (ii) 80% of care givers felt it appropriate to give written information at diagnosis, though only 53% of PwMND reported receiving this. (iii) 80% of neurologists believed that PwMND should be referred to the MNDA at diagnosis, though only 29% of PwMND recalled being referred at this point. Conclusion: The findings illustrate the value of gaining views of both patients and care providers in development of services for PwMND.