The health service in the UK is “not working” for people with rare diseases and they are being left to “fall through the cracks”, according to a new report.
Almost three in 10 (30%) people with certain uncommon conditions say they waited for five years after their symptoms started before they were diagnosed with their condition.
Even after diagnosis, many patients are left facing “poor care co-ordination” and face difficulties accessing information and support, the Rare Autoimmune Rheumatic Disease Alliance (RAIRDA) said.
And people with rare diseases see drastic changes in the way they are cared for based on where they live, according to a new report from the Alliance.
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:
– On average, patients waited for 31 months from symptoms to diagnosis, but this varied considerably between conditions. Many people said that they were initially misdiagnosed with other conditions before they received their diagnosis.
– Almost one in 10 (9%) said that after diagnosis, they waited for a year before seeing a specialist. The average wait to see a specialist was five months. The Alliance said treatment needs to “begin rapidly to prevent unnecessary disease progression”.
– After diagnosis, 5% of people said they were responsible for co-ordinating their care, while 9% said they did not know who was in charge.
– Only a quarter (26%) said they felt their GP understood their condition.
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.”
