I hope someone can help! I live in London and have decided to try and go private as otherwise I have a very long wait to see an NHS rheumatologist. My GP will refer me but I have to find the rheumatolgoist. I’m hoping to find someone who is both a specialist in osteoporosis and metabolic bone disease, as I think I have the latter. If anyone can advise someone good that would be such a help. It’s not just to oversee treatment but to try and diagnose why I have this conditon in the first place. Thanks!
Have you looked at The London Osteoporosis Clinic. I’ve not been there, but I’ve heard good things about it. It’s run by a rheumatologist. Have a loook at it. Hope this helps.
I haven’t - no. Not heard of it. I’ll certainly look into it. Thank you - that’s very helpful.
I’m under University College Hospital London NHS, they have said they accept referrals from a wide area. I had a 2/3 month wait (I pushed to be seen) but now under them they have been innovative from day 1 ( literally as on day 1 they arranged other urgent treatments that day, and follow ups that week). It now includes for osteoporosis etc
Thank you, Bea. And welcome to the community - I gather you’re new here as am I. I’m in the catchment for UCLH and my GP has referred me there, but I have a seven-eight month wait, which is too long. My doctor had reckoned it would be 3-4 months so the waiting list must have grown. Given what you say I might try and push for an earlier date but I do know they are so busy. A friend was given a rheumatology appointment (not osteoporosis) and told that if she couldn’t do that date it would a year before they could offer another one!
Hi Lizzie, I think once you are in the system it gets easier but you do have to be proactive and push, and I mean push, when you are in such need! I haven’t had direct treatment for osteoporosis but did get a meds infusion connected to my rheumatology team. I know how hard and unjoined up the NHS systems are especially GP to hospital, so you end up doing the joining, eg tests, whoever arranges it the other doesn’t automatically see it and often press you for it before issuing prescriptions.
Going private is expensive, ongoing, and will it impact you getting NHS treatment?
Good luck
Thanks Bea. I agree - you do have to be proactive. And things can get missed. I don’t think going private for this should make a difference to future NHS care. I remember one private doctor saying I could join his NHS list - I had the one appointment which I needed to get urgently as I was due surgery and needed to check something was all right first! Thank you for your good wishes.
A PS from me, Bea! I remember you said you found ULCH innovative. And I know they have a Metabolic Bone Disease clinic. I can’t remember if I said that I’m keen to find out the cause of my osteoporosis. It could well be secondary. The assumption seems to be female, post menopause. Must be x. Not good enough in my opinion!
Hi Lizzie I recall you saying about cause - and of course never accept lazy stereotypes that can allow things to get missed - saying its menopause, age. etc.
I do a lot of research, watch zooms, and question, but sometimes it can be too complicated without a scientific or medical background. I try to find causes and my initial autoimmune condition has other conditions now joining it. I go with a diary and questions when I see nurses, consultants. With medication side effects, and several conditions, its easy to miss things (I mistook a new issue for a side effect, and my GP has sent me for tests that the consultant, as a specialist, has a different approach to).
Does it sound familiar? And frustrating, exhausting, keeping on top of everything, trying to manage your life?
I joined NRAS and, helpful when first diagnosed but some of the information from speakers I wonder about eg leaky gut, evidence? Myself I look at allergies, including masters cell degradation which a consultant said not proven NRAS feels there is a link.
So like you, I try to find out causes and understand research, and question.
Hi Bea, I know exactly what you mean. And doctors and nurses are so busy that they often miss things, even the most thorough ones. And like you I don’t have a medical or scientific background ,which doesn’t help. It is frustrating though when you know they immediately think, woman of a certain age, post menopaue, take this and, if you’re lucky,you get a referral to rheumatology. I’m lucky in that - unlike it seems many others it seems - I got that, and with a department with a good reputation, but October is too long to wait to get an explanation of why I have this. And trying to find a rheumatologist who can help there, private or NHS, seems incredibly difficult. Good luck to us both, finding answers!