Patients with rare diseases 'left to fall through cracks'

PATIENTS with rare conditions are left to “fall through the cracks” of the NHS as they face a postcode lottery for treatment, a report says.

- By Ella Pickover

Three in 10 people with certain uncommon conditions say they were not diagnosed for five years after symptoms started.

Even after diagnosis, many patients are left facing “poor care co-ordination” and have difficulty accessing information and support, according to the Rare Autoimmune Rheumatic Disease Alliance.

And there are drastic differences in the way they are cared for based on where they live.

The health system has had an “increasing focus” on major and common conditions, the Alliance said in a report.

As part of the report, Ipsos polled 1,300 patients with rare conditions including lupus, Sjogren’s, vasculitis, scleroderma and Raynaud’s.