I received an email from the Rheumy Nurse yesterday. I should have known this was coming. My Rheumy has refused to back my application to see my Dermy in Cardiff.
I have been emailing my Rheumy Nurse and have been very honest about the way I feel about my care under my Rheumy. She has been offensive and rude on more than one occasion and her total lack of understanding of my condition has been obvious throughout. She has only just out me in touch with the Rheumy Nurse for support (and she has been there the whole time) and that's just one small part of it. The explanation given for me not being referred is that traditionally there case load of work is RA and they have not offered other services, like the support of a rheumy nurse to anyone else. I ahve pointed out that lupus is a chronic illness and the diagnosis is tough, we need support too. it's life changing. How short sighted!
So after my GP point blank refused to back a referral, my Rheumy Nurse was very understanding at our first appointment and agreed that I needed specialist care for my SCLE and a "GP With a Specialist Interest" was not adequate for me. She told me she would do the paperwork herself if necessary. What a fool I was to raise my hopes.
This is her reply.
"I have spoken with Dr ... unfortunately she feels unable to support the request for funding... not because she doesn’t think you need follow up specialist dermatology services but because she is aware that there is now a Locum Consultant (Prof....) starting properly in the Trust imminently if not already... which is great news. I think that you already saw him in July??? The funding panel will simply not even consider an application if the specialist service is provided within the Trust. I appreciate that you have built up trust and a rapport with Dr..... but for now at least Rheumatology don’t have a case to request that you continue to see him. We understand that Dr... (the GP with specialist training) is clear on what you treatment plan needs to be, and who to refer to if in doubt... I feel like I’m the bearer of good / bad news.
Also... Dr .. is very aware that she is probably not giving you the type of consultation that you require. Essentially from a rheumatology point of view your condition is now stable and led by the dermatology team. This may be why your perception is that she’s not interested / not believing... she certainly is and does but as a doctor cannot ‘do’ anything to fix and doctors do like to ‘fix’. Her sessions with you are also limited to 10-15 mins, hence the ‘quick in and out’ feeling. Its horrible to work in but we can see that it’s equally unpleasant for you on the receiving end. For that reason she is happy for you to see me in future rather than her but as always we discuss your care after any clinic sessions. I will of course take medical lead from her / dermatology and she remains your consultant, just that we spend time figuring things out. I see this as a good thing as generally speaking, I have more time in a clinic session than she does but still have access to all the info."
The Prof she is referring to is the one that a) told me to moisturise my hands - a known cure for lupus obviously b) never once discussed sun sensitivity with me c) could not use the computer in the room to access my blood test results and his explanation was that the computer had indegetion and d) did not know what dosage of MMF to put me on so after checking a few books he said 1g a day and come back in 2-3 weeks to see My Knight and he'll sort out your dosage.
So the Prof is a waste of time for me. I have no faith in his ability.
So back to square one. A Rheumy who has given me the impression all along that she doesn't understand or care and the choice of dermy care is a mad old Prof who has no idea or a GP with Specialist Interest.
Feeling so let down, disappointed and angry. I just want to cry.
To top it off been really struggling with fatigue and diarrhoea and headaches and itchy rash at the nape of neck, pains in hands/wrists and elbows etc etc.
The only positives are that I have meet a fellow SCLE sufferer, maggielee and we get on very well and she will be a great support, I can see. Plus my MP is taking on the case. I have complained to him about the total lack of specialist care here in my county of Pembrokeshire. Although I'm not raising my hopes for that.
I think that's Plan A, B and C etc all down the loo. Don't know what to do.
Wendy
Does anyone else have a sibling, or close family member, also effected by auto-immune disease?
Nothing gained by rheumy appointment 
No posters on hospital walls??
Has anyone ever been referred to a pain specialist??
