Wendy’s story

Like many others with a lupus diagnosis, my journey has been a very bumpy, long, and emotionally draining one. In November 2013, I was wrongly diagnosed but, with the benefit of hindsight, I can see there were warning signs going back to my teenage years.

Despite treatment for the misdiagnosed condition, the symptoms persisted and I started to officially question my diagnosis. I asked to be referred to an NHS LUPUS UK Centre of Excellence and my request was rejected. I complained to my MP and subsequently met two senior managers from my Health Board to put my case forward. However, two weeks later, I got an email telling me that lupus did not require specialist care and that my local rheumatologist was more than capable of diagnosing and treating me.

Back then, naively, I thought a few letters to my MP and my health board would be enough to change the system. I could get referred to an NHS Centre of Excellence, (all of which were in England), and I would then get the treatment I needed for my escalating symptoms. Little did I know that this would turn into a campaign many of us are still fighting, with lots of patients still not able to access the specialist care they need on the NHS in Wales.

I pay to see a lupus expert privately, at a specialist lupus private hospital in London and have done since 2017. At my very first appointment, after an hour of asking me questions and listening to my responses, looking at my blood test results and a physical examination, the lupus expert confirmed I had systemic lupus and had done all along. Rather than dismiss me and my symptoms, he listens. He has increased my medication, meaning that I feel that my lupus has been better controlled than it would have been. I have recently been diagnosed with heart failure and so now must face the new challenge of stabilising this and my lupus, with more medication being added into my treatment plan. I possibly need a biopsy of my heart too. Lupus is full of surprises!

I struggle mentally with the fact that I have had to fight so hard to be treated for my symptoms and that all my NHS Rheumatology appointments have left me feeling  so unheard. I struggle with the fact that in those early years I didn’t always cope very well, because of my symptoms. That I didn’t always get the washing done, or the housework and sometimes we had to have more takeaways than I would have liked, because I didn’t have the energy to get out of bed and cook a meal. That I slept so much. This despair at my situation, led to me reaching out to others, as I realised that I couldn’t be alone, there must be others in this situation in Wales, feeling that their lives were passing them by and that they needed more help.

I have been contacted by many lupus (and other autoimmune) patients in Wales who feel that they are not being listened to, their symptoms dismissed, their diagnosis continually played down, and many are not achieving any kind of quality of life. I have over sixty members in my lupus support group in Pembrokeshire and Camarthenshire, many of whom need better care and treatment. We need NHS Wales and Welsh Government to accept that lupus is a life-limiting, life-shortening chronic illness, with a poor quality of life. The average age of death is 53.7 years. Lupus patients in Wales need access to life changing, expert care and treatment.

I am delighted to have worked with FTWW on the ‘Making the Case for Better Lupus and Rare Autoimmune Disease Provision for Patients in Wales’ report, to be part of LUPUS UK’s contribution to the Women’s Health Wales Coalition, and to continue campaigning about lupus and autoimmune disease treatment and care in Wales.

I also continue to run Pembrokeshire & Carmarthenshire Lupus Support Groups, and I am also now a Trustee and Vice Chair of LUPUS UK.