We Need Earlier Diagnosis

Findings from our survey highlights the challenges faced by many in the UK in receiving a diagnosis for scleroderma, with some waiting up to a decade for confirmation that they have the condition.

  • People with scleroderma are having to wait at least two years and have more than 5 appointments with their GP before getting a diagnosis
  • Over a fifth (22%) had to make more than 10 visits to their GP before getting a diagnosis
  • 6% had to wait more than 10 years to receive a diagnosis

The findings show that a quarter of people experiencing symptoms of scleroderma had to wait more than two years to receive a diagnosis, with 6% waiting more than 10 years.

Scleroderma is a rare auto-immune condition which can cause serious health complications, irreversibly damaging vital organs, which is why earlier diagnosis is vital to the long-term health and quality of life of people with this life limiting and life-threatening condition.

The survey also shows that over a third (37%) of people with scleroderma made more than five visits to their GP before a diagnosis was made and over a fifth of respondents (22%) made 10 or more visits.

This needs to change so we are asking you all to join us in by standing up and saying #WeNeedEarlierDiagnosis

What we are asking for

We the undersigned are calling for greater awareness and understanding of Scleroderma and Raynaud's, to ensure that patients are diagnosed far sooner.

Scleroderma is a rare, chronic disease of the immune system, blood vessels and connective tissue. 2.5 million people worldwide have scleroderma, and in the UK there are 12,000 people diagnosed.

Currently more than half of patients diagnosed with diffuse systemic sclerosis, a potentially life threatening form of Scleroderma, will develop significant heart, lung or kidney problems within three years. (see Shand et al).

Research shows that early recognition, diagnosis, and aggressive management can improve the prognosis of systemic sclerosis (see Chris T. Derk, MD, MSc)

At SRUK we believe more can be done to diagnose the condition early and ensure appropriate treatment is given.

For this to change we need to see more people diagnosed sooner, so we are calling for earlier diagnosis of systemic sclerosis, through:

  • Enhanced education and training: Professional leadership bodies to improve Raynaud's and Scleroderma knowledge across all healthcare professions to facilitate earlier diagnosis and rapid referral to appropriate specialists.
  • Improved coordination of care: National leadership bodies to appoint a local clinical lead to improve the coordination of care for people with scleroderma.
  • Increased investment into research: During 2015/16 the Medical Research Council invested just 0.02% of their overall research spend into scleroderma. Safer and more effective treatments need to be brought to market to increase the quality of life for people affected by scleroderma.

Add your signature today and support the campaign to get earlier diagnosis for everyone affected by scleroderma.

Sign our Petition

We will be sending the petition to Jeremy Hunt, Health Secretary.

You will also be able to download a letter detailing the above and the number of signatures received. We would welcome you to print the letter and send to your local MP. For more information please email info@sruk.co.uk

By working together we can improve the lives of everyone affected by Scleroderma and Raynaud's.

Related information