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Abstract
Our objectives were to explore the personal perspectives of the diagnostic experience for people with ALS/MND and their family carers identifying issues that could impact positively or negatively on these experiences. We conducted a qualitative study with face-to-face interviews to capture experiences from 24 people with ALS/MND and 18 current family carers. Ten former family carers were also interviewed. The diagnostic experience was fraught with difficulties. There was failure to recognize the significance of some symptoms by patients, carers and primary and secondary care health professionals, which ultimately delayed diagnosis. Delivery of the diagnosis was frequently unsatisfactory despite international guidelines on the subject. Immediate post-diagnosis support often compared negatively to that provided for people with cancer. In conclusion, this study has identified a need for a more streamlined and empathetic diagnostic pathway for people with ALS/MND. Improvements to medical curricula are required to increase awareness of the condition and reduce the likelihood of diagnostic delays resulting from a failure to recognize the need for a neurological referral. Greater public awareness of the illness is also needed. Furthermore, delivery of the diagnosis should more closely adhere to established guidelines.
Acknowledgements
We are extremely grateful to all participants. This paper presents independent research commissioned by the National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0706-10369). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.
Disclosure of interests: None.