Autoimmune

Why we are Making the Case for Better Lupus and Rare Autoimmune Disease Provision for Patients in Wales

Wendy Diment, FTWW’s Autoimmune Champion

Rare autoimmune rheumatic diseases (RAIRDs) can be split in two groups: connective tissue disorders (Lupus, scleroderma, myositis, primary Sjögren’s syndrome) and systemic vasculitis (ANCA-associated vasculitis, giant cell arteritis, Takaysu’s Arteritis and Behcet’s disease). These conditions are characterised by the body’s own immune system becoming overactive and attacking healthy tissues, often in multiple organs throughout the body simultaneously, leading to tissue or organ damage which can be fatal.

It is estimated that over 3,000 people in Wales have Lupus, and over 80% of Lupus patients and those living with other RAIRDs are female (or assigned female at birth). In addition, Lupus has a 3-4 times higher prevalence in people of Black and Asian heritage.

At present, there are no specialist Lupus Centres of Excellence in Wales, and most patients have their referral requests to centres in England refused. The situation is the same for patients living with other RAIRDs, resulting in a postcode lottery with limited access to specialist care.

FTWW’s report, Making the Case for Better Lupus and Rare Autoimmune Disease Provision for Patients in Wales, contains twenty-one evidence-based recommendations to Welsh Government to help improve care and support for patients in Wales.

Read FTWW Autoimmune Campaign Champion Wendy’s story here.

Read our News story about the report here. 

Wendy also represents autoimmune patients on the Women’s Health Wales Coalition, which FTWW chairs. You can read the Coalition’s autoimmune appendix and recommendations on page 83 of their 2022 Quality Statement, which called on Welsh Government to improve healthcare for women, girls and those assigned female at birth (AFAB) across Wales.