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Ian's avatar

The honest truth is that neurology is still in the dark ages regarding the understanding of the diseases this specialty covered. MS is no exception. Only last week I read a story in the sports pages of a 45 year old footballer (diagnosed 10 years ago) who had died of MS. On the MS Society website is a story of a woman in her early 20s who has advanced MS and lives in a care home. I find these stories both sad and shocking. 20+ expensive MS drugs yet they probably only slightly delay worsening disability. The real metrics for MS care are not is the neuro friendly or does the MS nurse respond quickly to emails, but did treatments keep you in employment until normal retirement age, did the treatments stop your disability from worsening…. The focus should be on getting treatments which stop disability worsening not just relapses. The we can worry about issues of equitable access to these treatments.

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Patricia Munn's avatar

Good idea - I’m frankly astonished at the differing levels of care having moved and healthcare provided by a different trust. Still minimal access to neurologists but so many more and therefore much more access to MS nurses. However in this trust I have to travel over an hour to see my consultant and have an MRI and before it was 10 mins to the local hospital for both ( I have requested an MRI at local hospital 5 mins away which apparently is possible but seems to be an unusual request) Why does this happen?

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