SRUK reveals results of survey of Rheumatologists

SRUK Calls for greater investment in rare rheumatic disease training as survey finds Rheumatologists can struggle due to lack of education and resource

Healthcare professionals are not being given the support they need to ensure people living with scleroderma receive consistently high-quality care. That’s according to Scleroderma and Raynaud’s UK (SRUK) after a survey by the charity highlighted concerns over training and education, and the funding of specialist healthcare services. 

Scleroderma is a progressive autoimmune condition caused by the body producing too much collagen. It can stop parts of the body from functioning properly and, in severe cases, cause physical disability and be life-threatening. Around 19,000 people in the UK live with this condition. 

People with scleroderma will have their care managed by a rheumatologist, but SRUK’s survey found that even these consultants do not always understand the condition or what to look for. 

Of the 150 rheumatologists in the UK surveyed by SRUK, almost two in three (64%) said they were unsure about scleroderma’s signs and symptoms. More than one in five (21%) had either not heard of scleroderma or did not fully understand what it does to the body. This lack of awareness can lead to a delay in diagnosis, which may have irreversible effects on a person’s body. 

SRUK says greater investment into scleroderma care is needed to support rheumatologists in providing the best possible care. Many of the rheumatologists surveyed by SRUK (65%) thought scleroderma services and training and education for healthcare professionals about the condition are underfunded. Nearly nine in 10 (87%) said they would value further training in scleroderma care. 

Sue Farrington, SRUK Chief Executive, said: “We have some amazing rheumatologists who are highly knowledgeable in scleroderma and give patients the best care and advice, but others can struggle due to a lack of training and education. This will inevitably have a detrimental impact on the care they can provide. 

“Scleroderma is a potentially life-threatening condition and needs to be taken seriously by those responsible for the funding of healthcare services and medical training. 

“We know every healthcare professional, every rheumatologist, wants to provide the best care possible to their patients. We need more investment to develop more scleroderma specialists within the rheumatology workforce and ensure services have the funding they need.” 

Matilda Lally, 5, from Liverpool, was diagnosed with scleroderma in 2021. Her mother, Kirsty, says it took almost two years for Matilda to be diagnosed due to a lack of awareness. She was eventually diagnosed after the consultant they were due to see had, by chance, met a colleague specialising in scleroderma research earlier that day, so had the condition at the forefront of his mind.  

Kirsty says: “I first noticed something wasn’t right when Matilda was two. She bumped her head and the bruise eventually went away but then came back. I went to the pharmacist and then my GP, but everyone kept saying that children bump their heads all the time and I shouldn’t worry.  

“The bruise kept getting bigger and then became indented. Matilda was eventually referred to the paediatric team at our local hospital, but no one could tell me what was going on. It took nearly two years to get her diagnosis, which only happened because one of the doctors had met a colleague involved with scleroderma research before our appointment. Treatment started really quickly after that and Matilda now has weekly injections of methotrexate and abatacept.  

“It was really difficult getting her diagnosis – some doctors just don’t know what it is. Even now, when we go to the day ward at the hospital, some nurses don’t know what Matilda has. They assume it’s arthritis because she’s under the care of a rheumatologist. There definitely needs to be more awareness and education for healthcare professionals.” 

SRUK is now investigating how it can work with rheumatologists and other healthcare professionals to develop its own specialist training programme to help raise awareness of the condition among all healthcare professionals and ultimately support the NHS to speed up the diagnosis and treatment of people with scleroderma. 


About the Survey:

The research commissioned by SRUK was conducted by Censuswide with 150 UK Rheumatologists (Aged 23+) between 16.05.2023 - 24.05.2023. Censuswide abides by and employ members of the Market Research Society, which is based on the ESOMAR principles and are members of The British Polling Council. 

Survey results include: 

  • Just under three in four rheumatologists who answered the survey (72%) said they were not scleroderma specialists 
  • When asked about scleroderma and its signs and symptoms: 
  • 45% of respondents said they understand what scleroderma is but are less sure of its signs and symptoms 
  • 19% did not fully understand what scleroderma does to the body or its signs and symptoms 
  • 35% reported having a good understanding of scleroderma and its signs and symptoms 
  • 2% said they had not heard of scleroderma 
  • Six in 10 respondents (60%) said that their overall workload somewhat or does not particularly enable them to stay up to date with best practice guidance on the treatment and care of people with scleroderma 
  • Around two in three rheumatologists who were surveyed said that they believe scleroderma training and education for all healthcare professionals is underfunded compared to other medical conditions. The same number (65%) said they believe scleroderma services are underfunded compared to other medical conditions. 
  • Half of all respondents (50%) reported using SRUK as an information source to inform patient care. NICE was the second most popular source of information (46%) followed by NHS England (41%). Just 39% said they use the British Society of Rheumatology (BSR) as an information source despite the organisation publishing best practice guidelines for the care of people with scleroderma