Report: Making the Case Case for Better Lupus and Rare Autoimmune Disease Provision for Patients in Wales

Fair Treatment for the Women of Wales (FTWW) has published a new report which calls on Welsh Government to improve care for patients living with Lupus and Rare Autoimmune Rheumatic Diseases (RAIRDs).

Making the Case for Better Lupus and Rare Auto-Immune Disease Provision for Patients in Wales’ highlights issues around diagnostic delays, lack of specialist care in Wales, barriers to tertiary care, and issues in general practice and policy relating to patient care.

It is estimated that over 3,000 people in Wales have Lupus, an incurable immune-system illness that can be life-threatening. The most common symptoms are joint and muscle pain and extreme fatigue that isn’t helped with rest. Many patients also report rashes, anaemia, feverishness, headaches, and depression. 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.

Over 80% of Lupus patients and those living with other RAIRDs are female. 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. Our report contains twenty-one evidence-based recommendations to Welsh Government to help improve care and support for patients in Wales.

The Report aims to:

  • Highlight the current situation facing people living with lupus and rare autoimmune conditions in Wales
  • Ensure that patient testimonies and experiences are central to the co-production of future strategy and improvements in care
  • Make evidence-based recommendations which are in line with existing and developing policy in Wales and the UK to improve patient outcomes
  • Address the gender health inequalities which underpin inadequate service delivery in Wales.
  • Apply an intersectional focus to the experiences of Lupus and other RAIRD patients, not least by referencing the Black Lives Matter movement.
  • Consider patient experiences in the context of COVID-19.

Read it in full, here: Making the Case for Better Lupus and Rare Auto-Immune Disease Provision for Patients in Wales