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

FTWW Calls for Better Lupus and Rare Autoimmune Disease Provision for Patients in Wales

This Lupus Awareness Month, the patient-led women’s health equality charity makes 21 recommendations to Welsh Government in new report

Fair Treatment for the Women of Wales (FTWW) has today 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 Autoimmune 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.

October is Lupus Awareness Month. 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.

Wendy Diment, FTWW Autoimmune Campaign Lead and Vice-Chair of LUPUS UK

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 contains twenty-one evidence-based recommendations to Welsh Government to help improve care and support for patients in Wales.

‘We hope that Welsh Government will adopt these recommendations’, said Wendy Diment, FTWW Autoimmune Campaign Lead and Vice-Chair of LUPUS UK, who is the author of the report and a Lupus patient. ‘Whilst we are delighted that Welsh Government has declared itself a “feminist government” and Wales an “anti-racist” nation, unfortunately neither of these aims can ring true whilst the existing service failures exist, disproportionately affecting females and black and minority ethnic people, who make up the majority of patients with severe disease’.

Dalila Tremarias is a Lupus patient who lives in Cardiff, where she runs the Cardiff Lupus UK support group. ‘When I lived in England, I was diagnosed with lupus nephritis, which is one of the most serious complications of systemic lupus erythematosus (SLE). My immune system mistakenly attacked my kidneys, and it was such a scary time. I was able to receive specialist medical care which, together with multi-disciplinary care, got my flare under control and stabilised my kidneys.

Dalila Tremarias

When I moved to Wales years later, there was no specialist team in my area, and I wasn’t allowed to stay under the care of my NHS England team, despite them being willing to continue my treatment. Without specialist support, my nephritis returned and – despite my medical history – it was a challenge to get referred to a specialist team. My condition flared up continuously until it was finally agreed that I could restart the treatment that I’d been prescribed back in England.

When you have Lupus, you don’t know when your next flare will be, but appropriate support and medication have to be timely to stop the flare on early stages. Several factors affect the development of any lupus flares, but medical management is an essential factor to minimise damage to organs and the impact of the disease on the patient. Living in Wales should not be a barrier to optimum care.’

‘We welcome this report from FTWW which highlights the challenges experienced by many people living with lupus in Wales’, said Paul Howard, Chief Executive of LUPUS UK. ‘Lupus is a complex, heterogeneous disease often requiring a multi-disciplinary approach to medical care from a team of experienced specialist consultants. As an uncommon disease, not all Consultant Rheumatologists are suitably experienced to manage every case. We support the recommendations within this report to develop Centres of Excellence for lupus in Wales which could form the hubs for specialist care networks and result in significant improvements in the quality of care’.

Read the full report, here:

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

You can find out more about FTWW’s work at ftww.org.uk. More information about Lupus can be found at lupusuk.org.uk. For more information about RAIRDs, visit The Rare Autoimmune Rheumatic Disease Alliance website at rairda.org.