The NHS is “not working” for people in the UK with rare diseases as they are left to “fall through the cracks,” a damning new report has claimed.
Nearly three in ten (30 per cent) people with certain uncommon conditions say they are waiting for five years between symptoms starting and being diagnosed with their condition.
Many are still facing “poor care co-ordination” after their diagnoses, the report by the Rare Autoimmune Rheumatic Disease Alliance (RAIRDA) finds, alongside difficulties accessing information and support.
Geographical factors also make too big a difference, the authors add, with where people live making a drastic difference to the level of care they can expect to receive.
The report claims that the UK health system has had an “increasing focus” on major and common conditions, but people with these rare conditions are being left to “fall through the cracks”.
Rare autoimmune rheumatic diseases are a group of conditions, including: lupus, Sjogren’s, vasculitis, scleroderma and Raynaud’s, where the immune system becomes overactive and attacks the body’s healthy tissues.
As part of the report, Ipsos surveyed 1,300 people with these rare conditions in the UK and found:
RAIRDA said that the Government’s upcoming 10-year plan for health represents a “genuine opportunity” to make improvements in care to make sure that people living with rare diseases are not left feeling “totally alone with their disease”.
The report makes a series of recommendations, including: the expansion of specialised networks; the reduction in waiting times for diagnosis; giving greater access to support; and improving people’s experiences of how they are cared for.
Sue Farrington, co-chairwoman of RAIRDA, said: “As this report shows, across the UK, people with RAIRDs are not getting the care they need.
“The evidence echoes the stories we hear every day from our patient communities – the UK’s health system is not working for people living with RAIRDs, and they are falling through the cracks.
“These findings are perhaps not unsurprising, in a system where there has been an increasing focus on major and common conditions.
“The UK Rare Diseases Framework and subsequent action plans have enabled a significant step for rare conditions, but more is needed.”
A Department of Health and Social Care spokesperson said: “We know that those living with rare diseases and their families face immense everyday challenges.
“Improving co-ordination of care for people with rare diseases is a priority, and in our recent Rare Diseases Action Plan we set out plans to achieve this.
“More widely, our Plan for Change will transform the NHS by driving down waiting lists and investing in quality facilities to ensure all patients – including those with rare diseases – receive the care and treatment they deserve.”
