Like many others with a lupus diagnosis, my journey has been a very bumpy, long, and emotionally draining one. I was wrongly diagnosed with SCLE, sub-acute cutaneous lupus erythematosus, in November 2013 and I knew this was not right from the beginning. (With the benefit of hindsight, I can see that I had lupus when I had my third child in 2008, when I was aged thirty-three and in fact there were warning signs going back to my childhood & teenage years). My GP said my bloods and symptoms showed that I had systemic lupus, but the first Rheumatologist I saw said I had SCLE and this diagnosis was accepted by the second Rheumatologist.
However, the symptoms persisted, the medication prescribed was not doing enough to alleviate the symptoms 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 attended his office, for one of his Health Clinics, to meet two senior managers from my Health Board to put my case forward. At the time they seemed to understand how much this was affecting me, my life and my family. I was positive, that I had put forward my case well. 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. Furthermore, they said that I could not expect the NHS to pay for private treatment for me and that the Bath Royal National Hospital for Rheumatoid Disease was not a LUPUS UK Centre of Excellence. Despite correcting them, with confirmation from the Chair of LUPUS UK, that Bath was indeed a Centre of Excellence and explaining that I was not expecting them to pay for me to have private care, but for them to refer me to an NHS hospital, they would not reconsider.
That is when this really started. I naively thought, back then, that I would write a few letters to my MP and my health board and that 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 and that eight years later I would still be unsuccessful in getting an NHS referral to a lupus expert or an NHS LUPUS UK Centre of Excellence and that I would not have been able to change the system in Wales at all.
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 did have systemic lupus and had done all along. Rather than dismiss me and my symptoms, he listens. He has increased my medication, meaning that here and now, in October 2021, I finally feel that my lupus is well controlled and that I am achieving the best quality of life that I can expect considering my multiple diagnosis and symptoms.
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 that I am gas lit, time and time again. 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 am driven by this overwhelming sense of frustration and anger, of injustice, at the fact that in England, lupus patients can request to be seen by a lupus expert or attend an NHS LUPUS UK Centre of Excellence, and they have a right to a second opinion. It is their choice. Meanwhile, here in Wales we have no right to a second opinion from an expert of our choice and we are deliberately blocked from accessing Centres of Excellence, by the IPFR procedure.
I have been contacted by many lupus patients in Wales who feel that they are not being listened to, their symptoms dismissed, their lupus diagnosis continually played down, and many are not achieving any kind of quality of life. I have over fifty members in my support group, many of whom need better care and treatment. I even know of a lady who was officially given the diagnosis of hysteria. We are not in Victorian times, this is 2021 and it is about time NHS Wales and Welsh Government accepted 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 be working with FTWW on the ‘Making the Case for Better Lupus and Rare Autoimmune Disease Provision for Patients in Wales’ report, FTWW’s manifesto, and continued campaigning in relation to lupus and autoimmune disease treatment and care in Wales.
I continue to run Pembrokeshire & Carmarthenshire Lupus Support Groups, and I am also now a Trustee and Vice Chair of LUPUS UK.
Our campaign for change continues…