Charity financial support to motor neurone disease (MND) patients in Greater London: the impact of patients’ socio-economic status – a cross-sectional study

Abstract

Objective: there is an immense socioeconomic burden for both the patients with motor neuron disease (MND) and their families. The aim of this study is to evaluate the extent to which the provision offered by the Motor Neurone Disease Association is distributed among patients with MND living in the ethnically and socially diverse area of Greater London, according to the patients’ socioeconomic situation and needs.

Setting: Greater London, where age and sex-adjusted prevalence rates of MND in 2016 were calculated.

Participants: prevalent MND cases in Greater London, using anonymised data extracted from the Association’s database.

Exposure: demographic and socioeconomic characteristics

Primary and secondary outcome measures: receiving a Motor Neurone Disease Association grant, and the amount of money received.

Results: 396 individuals with amyotrophic lateral sclerosis were detected, the age-specific and sex-specific prevalence of MND was 4.02 per 100 000 inhabitants, higher among men (5.13 per 100 000) than women (3.01 per 100 000). Men were statistically significantly 40% less likely to receive a grant compared with women; among grant recipients, the younger the age of the participant, the higher the size of the grant received. The Index of Multiple Deprivation was not associated with either receiving a grant nor the amount of money received, among recipients.

Conclusion: financial support by the Motor Neurone Disease Association is provided across individuals and across boroughs regardless of their socioeconomic circumstances. Differences that benefits women and younger patients were detected.

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Identifiers

ORCID for Dianna Smith: orcid.org/0000-0002-0650-6606

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