I'm going to try to keep this concise and not go over too much of my history with SCLE. I think those that come here regularly will know that I have struggled to find a consultant that understands lupus (SCLE for me) and to help me. I finally found a Dermatologist this year, (My Knight) who has helped me no end and prescribed me 3g Mycophenolate a day, in an attempt to get my residual symptoms under control. Symptoms that were mainly systemic and should have been treated by my Rheumy. But after 3 years under her care, I have no faith in her whatsoever, unfortunately. My Knight actually told me, he was pushing his role as a Dermy, but could see I needed help. He saw me at my lowest, when I had handed my notice in at work as I couldn't cope anymore. Apart from my Rheumy not helping me out, she has no people skills and never makes eye contact with you.
Anyway, I digress. My Knight has left employment with my health board, Hywel Dda, (Wales). I discussed following him to Cardiff at my last appt with him and he told me he had been refused himself, with some of his patients and I would have to find another way of getting referred to him. In the meantime, he put me on the Dermatology list for a GP with a specialist interest - at the other local hospital. I told my Knight that I didn't want to stay at the hospital I had been seeing him at, as I had terrible experiences with the other Dermy doctors there - being told that I just needed to moisturise my hands and being left to leave an appt in wracking sobs, tears streaming down my cheeks after one refused to help me. even though I was begging and saying I couldn't cope.
So yesterday I had an appt with my GP and asked him to back me getting a referral to my Knight in Cardiff. I explained the background. He said he understood. But it was categorically no. They don't work. It goes before a panel. They turn down every single one. Wouldn't help. Wouldn't budge.
So upset, frustrated, angry, alone, upset.
I know that sounds dramatic. And I can ask the GP with the specialist interest to back me for a panel review, so my GP tells me. He says that I should get the GP with specialist interest to say that monitoring me is beyond his expertise and that I should be referred to my Knight in Cardiff.
But it's the effort to get this all sorted. It's draining isn't it. Why cannot I see my Knight? Why doesn't Wales have any lupus specialists that I can see. Why is there is internal political battle with health boards where mine wont pay for you to be referred to see someone outside your own area?
Surely, that is detrimental to my care? I am very lucky, I know, that i haven't experienced internal organ involvement to date, but I have SCLE with some systemic symptoms and I understand that nearly 20% of people with SCLE end up with SLE. If not managed correctly, we all know lupus can be fatal. That's my concern, with not trusting the doctors I see.
I had asked my GP - before my Knight sorted out my meds - if he wold refer me for a second opinion from a lupus specialist, at either the Royal National Hospital of Rheumatoid Disease in Bath or at the lupus centre in London and he refused that too.
On top of it all, I'm not convinced the MMF is working yet - started 20th July and I am waiting for appt with Neurosurgeon re syrinx cyst on my spine. Had a further MRI on my head/neck 2 weeks ago, but MRI hasn't been reported on yet. Bene told 30 weeks minimum, so April 2017 before I can discuss this with someone who knows what they are really talking about.
Sorry to go on. Anyone else experienced these problems finding a doctor they can trust? Or had a case go before a panel?