Half of people living with scleroderma in the UK aren’t getting the medical support they need

Scleroderma & Raynaud's UK (SRUK) launch #KnowScleroderma campaign to increase awareness and understanding of the condition to drive earlier diagnosis and better treatment

• New research finds nearly half (48.7%) of scleroderma patients are not confident that their GP knows enough about their condition
• Only 1% of the general UK population understand what the condition is
• People with scleroderma are having to wait at least three years and have more than five appointments with their GP before getting a diagnosis

Scleroderma & Raynaud's UK (SRUK) mark the start of Scleroderma Awareness Month by releasing findings of its latest study, revealing scleroderma patients lack confidence in health care professionals' knowledge and understanding of their condition – which SRUK say is holding up diagnosis and lifesaving treatment.

An estimated 12,000 people in the UK are currently diagnosed with scleroderma, with many more thought to be undiagnosed, and yet just 1% of the general UK population understand what the condition is, 2. This lack of understanding means sufferers are not getting diagnosed early enough, as the signs are not easily recognised by people with the condition or health practitioners. Symptoms include:

• Raynaud's phenomenon; a condition where fingers and toes change colour with temperature changes, stress or anxiety
• Sore or swollen fingers
• Reflux or heartburn

Some patients are having to wait at least three years and have more than five appointments with their GP before getting a diagnosis.

Scleroderma is a rare auto-immune condition which can cause serious health complications, irreversibly damaging vital organs. Quick diagnosis is vital to the long term health and quality of life of people with this life-limiting and life-threatening condition, as scleroderma does the most damage within the first three years .

Worryingly, SRUK's research reveals nearly half of people with the condition (45.3%) waited three years or more to receive a diagnosis after their first scleroderma symptom. Following diagnosis, over a third (36.2%) felt they did not get enough information from the hospital about their condition, and nearly half (48.7%) are not confident that their GP knows enough about their condition.

The research also showed that 35 per cent of people have to visit three or more hospitals for routine checkups as no one hospital is able to provide the support or expertise for their condition. A life with scleroderma also means regular unplanned visits to hospital, with 35% having had three or more unforeseen visits due to their condition.

Teresa Groundwater, 45, from Northumberland wishes she has known the signs of her condition sooner:

“I have had Raynaud's for as long as I can remember, I can never remember having warm hands and feet. It got worse as I got older, to the point that in winter I developed painful sores on my feet, but I just wrapped my feet up and hobbled on as I assumed it was just one of those things. I had also suffered from acid reflux and joint pain since my late 30s but as the symptoms were so diverse I never put them all together."

“I finally visited my GP in 2015 when I turned 42. I had terrible pains in my hands, sore, dry eyes and mouth and was exhausted all the time. After an initial test (and being recalled for repeat tests twice) the GP organised an emergency appointment with the Rheumatologist who confirmed I had Scleroderma, Raynaud's and Sjogren's. I wish I had gone earlier to my G.P. I had just these two symptoms, cold hands and reflux, but assumed they were random and unconnected.”

The emotional toll of scleroderma is also clear in the research, with almost a third (29.3%) of people saying the condition has had a negative impact on their family, over 80 per cent (81.5%) feel isolated or lonely as a result of their scleroderma, and half admit (50.1%) they struggle to cope with their illness, 1.

Sue Farrington, Chief Executive of SRUK, is urging people to support and share the campaign's information as well as donate, she says:

“We urgently need to raise awareness of the condition and help people spot the signs quickly. We hope our #KnowScleroderma campaign will not only increase awareness and understanding, but will also help speed up diagnosis and access to treatment."

“The donations we receive are vital as they help us fund research into Scleroderma and Raynaud's which help us build better understanding and treatment for everyone affected.”

Dr. Francesco Del Galdo, Associate Professor, Head of Scleroderma Programme at the Leeds Institute of Rheumatic and Musculoskeletal Medicine:

“Scleroderma is the rheumatic condition with the highest burden for patients and the NHS, but this is not fully recognised by the non-experts in the field. A full awareness of what Scleroderma means for patients and health professional will undoubtedly help to find a cure and more effective treatments.”

To find out more about scleroderma, you can watch SRUK's educational animation coming shortly, or to hear the real life stories of people with the condition, watch SRUK's 'I have scleroderma' short film coming shortly. With your donations and support SRUK can get to know scleroderma better by continuing its vital medical research. For more information about the campaign, or to donate visit the Scleroderma Awareness Month campaign page.

World Scleroderma Day takes place on Friday 29th June, seeing organisations from around the world unite to increase awareness of this rare autoimmune condition.

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For more information about SRUK and interview requests please contact Amy Baker 0203 893 5991.

NOTES TO EDITORS

Research conducted by Scleroderma & Raynaud's UK (SRUK) as part of a larger research study in partnership with Rare Autoimmune Rheumatic Disease Alliance (RAIRDA), whose members include Lupus UK, Vasculitis UK and British Society for Rheumatology (BSR). The research was conducted in 2018, over a four week period and polled 439 scleroderma patients.

About SRUK

• SRUK is the only UK charity dedicated to improving the lives of people with scleroderma and Raynaud's phenomenon.
• They improve awareness and understanding of these conditions to support those affected and, ultimately, to find a cure.
• Over 2016 and 2017 SRUK supported over 162,000 people in Britain. Their aim is to reach out to every single person who has scleroderma or Raynaud's diagnosis, providing them with the information and support they need.