I’ve had an usually bad relationship with both my rheumatologist and GP, both performing regular checks and hiding my results from me and refusing to send me to specialists.
Both ignoring my chronic chest problems, (pleurisy, serious chest infections and pneumonia more than once each year) and kidney infections (hospital admittance and 3-4 serious infections per year).
Now I have kidney cancer, stage 3 and lost my left kidney.
I would like to see a specialist at St. Thomas as I am still having kidney infections and the Rhumatologist has finally admitted its Lupus related.
I have a new GP, he says he can’t refer me, but has written to mr new Rhumatologist, is this how it happens?
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Iona467
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Maybe try a new GP. Or complain to the practice manager? They shouldn't be refusing to refer you to a specialist (it is the GP that has to do it, but some are trying to cut costs by doing this kind of thing).
The postcode lottery may be in play if you are not local to St Thomas's.
I know it's not right but many of the team at St Thomas's also work at The London Lupus Centre and if you can first get an appointment there (Not NHS), they can refer you to their list.
But again, the team at Guys and St Thomas (NHS) are extremely stretched due to extremely long patient lists and are always under pressure to trim their lists.
If you are not local they may be reluctant to add you to their lists.
However if you investigate further you will gain further information which could help your cause
I know if people attending there who are much further away from London than I am plus others who regularly attend who live where I do. None of them have the same uncontrolled Lupus that I have. It’s very frustrating.
You are entitled to a second opinion referral under the nhs to your choice. I learnt that from this page. Just be warned both st Thomas and guys are extremely stretched but do have some amazing rheumatologists x
I asked my consultant for a second opinion to be done by Guys hospital. Luckily she was sympathetic and referred me. Also, you should be given sight of blood tests results. Good luck x
As others have said, may be worth attempting to see one of these doctors privately first to be referred directly.
I’ve done this, and subsequently, one of them has strongly advised my GP to refer me on to his clinic at Guys - personally I think if it comes directly from the rheumatologist themselves then it may throw more weight behind it with the GP. It’s certainly annoying, but sometimes it’s just a game we have to play to enable us to get the correct treatment. x
So sorry to read this Iona. Have you tried PALS? Patient Advice and Liaison Service. nhs.uk/common-health-questi... They might be able to help. Wishing you all the support you clearly urgently need and a hug. D
He can refer you and he should - I run a support group and have taken two of our group to Guys at London Bridge. Under the Patients Charter we are allowed to choose our hospital, and Guys will take you for a second or third opinion. Look up the Patients Charter, print the relevant page. Take a strong supportive friend/relative with you and demand your Doctor do this. We were seen within two weeks at Guys and they were amazing. I am treated well out of my postcode as I found a good Consultant and asked to see her - sorry we have to fight all the way with this illness - appalling. If you want further encouragement get in touch again. Cas 70
Thank you so much. I have been treated so badly, my Rhumatologist was found out not adding the Lupus tests in my blood tests. He told me he didn’t do it as I always get such terrible results and he ignores them as they are just me! He got found out and the official excuse was that the Drs Centre has missed them out by error, that they had originally been included. Is so very hard.
They stick together. I found by chance the most horrid letter sent by a dermatologist to my GP. Please try the route I suggested and get back to me at any time. Try as soon as possible. I have those awful aches and pains everywhere but have improved since being on a very small dose of steroid. Keep in touch
No that's not how it happens. I'm shocked both of your doctors did that and that was how you learned you have Lupus. Not good! I'm so sorry about your kidney cancer and that your suffering with so many problems. I hope things work out for you and you have an amazing life.
Thank you. I saw my new GP yesterday and told him he cannot pass this request, a second opinion re my Lupus, to the very people who have given me such bad service and lied to me. I told him I would do a complaint if I don’t get an appointment and will not let this go.
Iona, What was the reason your GP wouldn't give you a referral to kidney specialist? I think it's absurd and wrong especially since you obviously have a problem with your kidneys. I'm glad your going to a new Rheumatologist, maybe they will give you a referral, that's what mine does. I hope it goes well for you and you get the help you need. Remember that you are your best advocate in your health care so be firm and make sure that any doctor you see understands your not taking a back seat, their job is to help you so hold them accountable. Good luck my friend.
The original GP and Rhumatologist said Lupus isn’t connected to kidneys plus I had to put up with it. Wouldn’t let me see any specialist and lied that I was on the list for a back op and an op to remove 3 huge growths in my womb. I managed to change GP do my re medical records have mysteriously disappeared from this time.
That's terrible! Those doctors should lose their license to practice medicine, they clearly don't care about their patients. Very scary. I hope everything goes well from here on for you, you've been through enough.
My new Rhumatologist didn’t see me, I saw the junior. Letter from him. month after meeting, wanting to defer seeing the specialist as I am back on old meds. Furious. These meds didn’t stop my relapses, already lost one kidney and still having infections.
Who put you back on old meds? Regardless of that the rhumatologist still should have seen you. I'll never understand the reason for their lack of understanding what their patients are going through. There doesn't seem to be any empathy, they did take an oath to do no harm, I actually said that to a doctor and he shut up. Maybe they need to be reminded every now and then. I wish I had a magic wand to make it better for everyone but unfortunately I don't. I don't know why everything has to be so difficult, you have to jump through hoops to get anywhere and that's wrong. I hope you feel better and get the help you need and deserve. Good luck and keep in touch.
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How often does other get kidney infections 
Slow to get a rheumy appointment
On Azathioprine for SLE got MRSA
How do I request tests? 
