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
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Wendy39
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"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’."
Then can I suggest she's in the wrong speciality? Is there actually ANYTHING a rheumy can "fix" in the sense of cure? Their role is to help us live WITH our illness to the best level possible - and prevent us deteriorating any further.
At least in England you can be referred to the hospital of your choice - and the other day I watched a Welsh MP on TV claiming how wonderful the NHS in Wales is. Really can't say that is an impression I have gained from rheumatology patients on the forums I lurk on...
It's a terrible situation. Like I have said before the nearest Rheumatologist recognised by Lupus UK is Julian Nash in Cardiff. I would happily travel to see him. But I can't get a referral to my wonderful dermy, let alone a referral to a specialist rheumy.
I don't think anyone else understands, except for maggielee, as she is here too, going through the same battles. The NHS in Wales is flagging behind and the waiting lists are longer etc etc. I have heard of people moving to England to access better healthcare.
There is a complete lack of understanding of lupus.
I read on here last week I think it was, about someone's GP referring them for a 3rd opinion/rheumy appointment. Wow! 3 opinions. It's so hard to read and accept.
I don't think I have any option but to try to find out if my Knight does a private clinic anywhere and pay to see him, maybe once a year, for my peace of mind and sanity!
Ugh....sounds like a distinct case of 'heartsink' syndrome, where a doctor who can't cure a patient doesn't want to be reminded of their own failure at being the saving grace. It's ego. It's frustrating as hell. I feel your pain, OP - I've been in a real morass myself with care that didn't seem to 'care' much. I know how demoralised you feel.
Once you're done giving yourself some self-care (really important, please do something you enjoy and give yourself some love), maybe 'the GP with a special interest' won't be a huge help, but they MIGHT be more willing to try and track things down to assist you. That's the 'wanting to fix' thing again, which sometimes can be used to your advantage. I've had 'heartsink' health pros who just wanted to know 'what are you expecting me to do for you? There's nothing to be done', and I've had a couple shining stars who said 'I'm not giving up on you, we're going to figure this out!' - they took the 'unfixable' thing as a personal challenge, and went above and beyond. So it may be with someone like that in your corner, you could get help that you need in a different place - because that most dreaded of spectres, the theoretically-trained locum, is so not someone who needs to be handling actual patients!
I wish you much chocolate, if you imbibe it, and plenty of Netflix. Just breathe and be for now.
The GP With Specialist Interest is not up to much. I now someone who has seen him. I will try to reserve judgement until I see him this Friday. But waste of time has been mentioned.
When I went back to the hospital for the follow-up appointment - no diagnosis even suggested at the first one by the way so I expected to see the consultant again - I walked in and met a complete stranger. I expressed my surprise and he then proceeded to do an identical history take and physical examination to the one the consultant had done 6 weeks earlier. I reported the 6 hour response of my symptoms to 15mg pred - no interest shown. Eventually he declared himself out of his depth and fetched "the boss". Who wasn't much more help - also refused to look at my "response to pred diary" and announced HE thought it was not PMR but psoriatric arthritis (never had psoriasis in my life and I had no real JOINT pain, just tendonitis and maybe synovitis) and I would have to find a rheumy here in Italy as he wanted to use sulphasalazine (don't go out in the sun, helpful here).
I left in disgust - having established the unknown bod was a "GP with a special interest". About as much use as a chocolate teapot - no wonder the NHS is in a mess when time is wasted for new and undiagnosed patients like that. Luckily, a "Specialist GP" at the practice - who specialised in listening to the patient - helped by providing the drugs.
Sorry for your experience. But as my doctor friend said to me, when I was explaining it all, a GP With a Specialist Interest" is a GP who has read an extra book. Sad but true. X
And a "GP with a special interest" gets to have a day out of the practice attending clinics - anything for a change of scene!
Same as the "musculoskeletal specialist" who is a physiotherapist with an extra bit of paper - but all too often because they found real physiotherapy too much like hard work - who wouldn't rather sit at a desk and make decision!
Is there any way you can change your doctor or are they all this bad where you are? I managed to do this (discreetly) by messaging people on this forum who go to the same hospital I don't think they like us to name names publicly, but I have found a consultant who is much better able to help. Good luck and loads of sympathy.
I have changed GP once already, as last GP surgery only had 1 GP at one point and I just couldn't access the GP service I needed there. The new GP surgery is 1000 times better but still about a 5 week wait to see GP of choice.
As for changing Rheumy - no. No chance of changing. I have not been explicitly told this, but it seems that's it's her or nothing.
I am stuck in a rut.
Thanks for replying though. Just the fact that people take the time to read my post or follow my story, and then reply is a huge support.
😔 am so sorry Wendy...and am 😤 fuming with dismay at your description....nothing I can add to these great replies...just want to say that I totally "get" what your saying + I like the way you're thinking, so: COURAGE! Am SO GLAD you & maggielee have met up 👭👍👍👍👍
Thank you Barnclown. I will keep you posted. Appt with GP with SI on Friday and appt with Neurosurgeon next Wednesday 23rd - private in Cardiff and my husband is driving me to that one because he wants to be at the important ones - to support me emotionally and make sure we cover everything and both understand. So fingers crossed. All this fighting with establishment is exhausting! Wish someone could advocate for us!!!! Maggielee is a star! We are keeping in touch and plan to meet again, 3rd time soon. X
Wendy39 has been in contact and unfortunately we are very limited in what assistance we can provide in this circumstance. There are some great lupus services in North Wales (we recently funded a specialist lupus nurse at Llandudno hospital), but other parts do need to catch up. Our Chair, Kevin Weston attends the ARMA (Arthritis and Musculoskeletal Alliance) meetings in Wales and they do campaign for improved care and services across Wales.
Llandudno Hospital is about 4.5 hours drive for us. North Wales is a long, bendy drive up through the mountains etc. It would be easier to get to Cardiff 2 hours or Bath within 3. But it all boils down to getting a referral out of area and getting someone to back you for it! Viscous circle.
So sorry your Rheumy won't back a referral to your knight in Cardiff!. What a terrible blow for you which leaves no option but to try seeing him privately!. Comes to something!. You do also need a new Rheumy as your never going to feel the same way now about her!. Is your Rheumy clinic quite a big one with several consultants?. You could try seeing a colleague , not for a referral but your ongoing lupus care!. PMpro is so right as she is in the wrong speciality if she wants to fix!. Hurrah for forum where new friendships are forged and good luck for Friday!. Hope you get a nice surprise, you sure deserve it for fighting hard!. Good luck. X
Thanks for your reply and little pep talk. It's a battle I could do without and depends on my energy levels but I won't stop. Like I told the Rheumy nurse even if I don't change things for me maybe I'll make them think about how they treat the person diagnosed with lupus next week. The Rheumy nurse said they will refer all lupus patients for the support of Rheumy nurse now automatically on diagnosis now, so that's one thing I've hopefully helped changed. X
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