When Dalila Tremarias lived in England she was diagnosed with lupus nephritis, a life-threatening condition that causes her immune system to mistakenly attack her healthy kidneys.
Thankfully she was able to receive specialist medical care from a multi-disciplinary team of NHS experts who got her flare-ups under control and stabilised her incurable illness.
However, after moving to Wales she discovered that the same standard of care she received across the border did not exist here, leaving her kidneys and other organs at risk of being irreversibly damaged.
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"When I moved to Wales 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," said Dalila, 34, who runs the Cardiff Lupus UK support group.
"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."
Fair Treatment for the Women of Wales (FTWW) published a report late last year which calls on the Welsh Government to improve care for patients living with lupus and rare autoimmune rheumatic diseases (Rairds).
It 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.
An estimated 3,000 people in Wales have lupus, which typically causes joint and muscle pain and extreme fatigue that isn't helped with rest. Many patients also report rashes, anaemia, feverishness, headaches and depression.
More than 80% of lupus patients and those living with other Rairds are women. In addition, lupus has a three to four 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.
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FTWW's report contains 21 evidence-based recommendations to the Welsh Government to help improve care and support for patients in Wales.
Wendy Diment, FTWW autoimmune campaign lead and vice-chair of Lupus UK, who is the author of the report and a lupus patient herself, said: " Whilst we are delighted that the 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."
Wendy, who started the Pembrokeshire Lupus Support Group in September 2017, said the low numbers of people accessing these services in Wales is given as a reason for not investing further, leaving patients with nowhere to turn.
"All the people with whom I have engaged on this journey agree on one thing: the current system for people living with lupus and other rare auto-immune diseases in Wales is not working," she added.
"We do not feel that we are diagnosed, treated, or monitored correctly. Our condition is not taken seriously enough. We do not think that national guidelines for the management of adults with lupus are followed. We feel ignored. We feel neglected. We feel misunderstood. We feel alone. We all think we deserve better.
" W e hope that the Welsh Government will adopt these recommendations."
Paul Howard, chief executive of Lupus UK, added: "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."
In response a Welsh Government spokeswoman said: "We recognises the impact lupus can have on people’s health and lives.
"We are currently reviewing the musculoskeletal treatment pathway for patients which includes lupus and will shortly be appointing two national clinical leads to drive forward service development in this area. We will continue to work with relevant organisations, including Lupus UK and Cymru Versus Arthritis, to improve treatment for people affected."
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