Lupus: The women 'constantly fatigued' by chronic condition made worse by 'poor support' in Wales

People living with a chronic condition which can cause extreme fatigue and pain say poor support and slow diagnosis in Wales is forcing them to pay for private care to treat the condition.

Wendy Diment from Pembrokeshire said when she was diagnosed with Lupus, it was so severe she was forced to give up her job.

Wendy said "I am constantly fatigued. I've not been able to work for a few years now. Day to day activities can be exhausting, just having a normal life or trying to be normal sometimes is impossible."

With no centres of excellence and little expertise in Wales, she now travels hundreds of miles to access care privately near London. 

"It's frustrating because you know if you lived in England, you could access those centres of excellence. It's one of the worst kinds of postcode lotteries you can have. We don't have that knowledge that we're being looked after as best as we possibly can."

A lupus rash can appear on different parts of the body, including the back of the neck Credit: Wendy Diment

What is lupus?

Lupus is an autoimmune disease where the immune system attacks healthy parts of the body.  It can cause joint pain, skin rashes and extreme tiredness and in severe cases it can be life threatening.  There is no cure, but symptoms can improve if treatment starts early.

Lupus can affect everyone differently.  

For Helen Eckley from Kidwelly, Lupus causes pain in her joints and severe fatigue. She has also suffered mini strokes which cause pain in her face. 

She feels many patients are living in limbo without access to expertise in Wales. 

"Sometimes as a patient and as a woman, I feel I am being dismissed. 

"There's no actual Lupus specialists here in Wales. It would be good if we could access the centres of excellence in England and have a specialist who would actually take notice of what you're saying rather than fob you off".

In the most serious cases lupus can be life threatening Credit: Wendy Diment

Paul Howard from Lupus UK said a disproportionate number of Lupus patients in Wales are seeking private care for the condition compared to other patients across the UK. 

"We know many people living with Lupus in Wales are dissatisfied with their care. We've seen data from across the UK and Wales represents the highest proportion of people with Lupus who are paying for private care from another area, which is indicative of how disproportionate the situation is."

  • Although lupus affects people of all ages, it's most often diagnosed between the ages of 15 and 45. 

  • More women than men get lupus, and it's more common in black and Asian women.

Campaigners and patients said they'd like to see improved access to Lupus care in Wales in the future.

A Welsh Government spokesperson said: “We recognise the significant impact lupus can have on people’s lives. As with other rarer conditions, health boards refer patients on for specialist treatment where it is not available locally.

“We will continue to work with partners such as the British Society of Rheumatologists, Versus Arthritis and Lupus UK to strengthen support for people with lupus and other musculoskeletal conditions.”