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.