I'm really struggling at the moment (think I posted about how wonderful I was feeling etc. & that lasted approximately 1 day). I can hardly walk, lots of pain, can't do much at all & now I feel fluey & have a raised temperature.
So far the GPs at the local practice have been remarkably useless & brusque to the point of rudeness so I've avoided the place since I was diagnosed. But have now made an appt. for next week, partly to ask for a referral to a private Rheumy, but also because they need to see what's going on.
What I would like to know is what role other peoples' GPs play. I get the impression that some will relay updates & questions to the Rheumy & that they at least take an interest in whether DMARDs etc. are working. Personally, having done the same Amateur Rheumatology course as loads of other people here, I think I need to up my dose of MTX; I don't want to, but objectively that's what I think. Can I expect the GP to discuss that with me?
Perhaps I'll get lucky & the GP will be helpful, I'm not going to turn up expecting the worst. But I've had such bad experiences e.g. a really angry response the last time I asked about seeing a private Rheumy that I've got no blue print for what I can reasonably expect.
Any thoughts?
Hope you are all doing something a bit more exciting than I obviously am this Saturday evening!
Nope am doing the same as you and reading the latest blogs!
Every time I speak to the GP regarding anything to do with me and my PsA, it's what does the hospital have to say, contact them, they are the only ones who can increase/decrease/change your medication. So now I just email my rhumy nurse each time I have a query and head it 'Question ..............'. I normally get a response by email or phone call either that day or the next, dependant on the time of day I email.
Sorry this is maybe what you didn't want to hear. xx
• in reply to
Well it helps considerably to know that your experience is so similar - just another part of the learning process! I've noticed that a lot of people are in contact with their Rheumy nurse & if the GP won't help then I'll phone mine & see what happens.
Thanks Georje,
Christina xx
Hi Christina. I know we've discussed GPs before so you know mine are good - but then they do a share care thing with the consultants in Aberdeen for obvious reasons. I do have physio woman from my choir whom I can email and she will pass them on but she goes home to Oz for month long stretches so at the moment I'm waiting for my GP to get an email back from my rheumy re the pins and needles. I'm very lucky that I like and respect all three of my GPs here but they aren't perfect of course and sometimes get things wrong. It's also quite hard for them as they aren't trained to monitor disease activity so when I had an 8 and half month wait after being diagnosed and put on MTX - they emailed regularly on my behalf and finally advised me to make a formal complaint to the medical director here because they had hit a brick wall. For a while I envied many on this site for seemingly having proper rheumy teams but I don't anymore.
Have you tried all the GPs in the practice yet? If there are any you haven't tried perhaps give them a go? I think Lavender Lady told me once to remember that these GPs are on good salaries and you need to be very firm with them. Look them in the eye and explain that you are now pretty knowledgable and come on here often so you know what should be happening and it just is not. Everyone has the right to seek a second opinion in the UK so be assertive but try to appeal to the human in them too? Ask them what they would do if their wife/ husband/ parent was in your shoes and was being left in limbo land while joints were being rapidly ruined by this disease - whatever it is.
Explain how the consultation made you feel and then how disapointed you were when you read his letter. See what he or she have to say and try your hardest to approach the GP as if they are human rather than a martian with no feelings. Good luck let us know how it goes. TTxxxxx
Thank you, Tilda. You've endorsed how I'm feeling already. I'm not going to throw a wobbler but it must be said that delay has proved fairly disastrous for me & I am also going to put the difficulties I now have on a daily basis on the line in terms that anyone can understand! As you say, I am expecting someone with some human feeling but if they are obstructive I'll be firm. I think I've got to the point where I see myself more objectively & am very confident that I'm no 'nuisance' or hypochondriac. I think being so easily put off by GPs' poor people skills has been part of my denial - somewhere inside of myself I was thinking 'no wonder they are so dismissive, I'm not too ill!'
My GP is very clear that anything to do with physical RA symptoms must come from my consultant - so won't adjust the RA drugs at all even tho' I get my drug prescriptions from her these are only what she is told by consultant. She says that otherwise it's not clear who is taking responsibility and risks confusion. However, she is concerned about my pain relief, which she says is part of her responsibility, so does prescribe these, and does also check up on how I'm doing emotionally as she knows that the rheumy's aren't really that into the touchy feely side. I think there may be a difference between English practices in towns/cities and Tilda's experience in rural Scotland as I've discussed this with others in England and they have the same experience.
Do you think your GP understood what you were asking about being referred to a private Rheumy? Maybe she thought you were seeking a second opinion on NHS which they do soemtimes resist.
But, if you have a raised temperature that's over 100 then you need to get advice as may well have picked up a bug.
Can't remember how long you've been on your dose of MTX, but if more than 6 months then yes also think you should be asking for a medicine review.
Sorry slightly garrbled response, but hope makes sense. Right hand flaring so typing is awkward tonight. Pollyx
It's extra kind of you to reply with a flaring hand!
Yes, I can see that there is a need for clearly defined roles. If a GP put it to me the way yours put it to you, I'd be thinking that my relationship with them had taken a turn for the better!
Yes, the GP knew exactly what I was asking for. I did not want to wait 3 months for the first Rheumy appointment and asked if I could go private instead. He just started talking very quickly and angrily and clearly said that if I went to a private Rheumy then I would be taking myself out of the NHS system .... just dead rude & otherwise incoherent. My OH was there & could not make head or tail of most of it either. I've now phoned NRAS & been reassured that I can see a private consultant without foregoing NHS care. Neither I nor my OH felt inclined to challenge him, we were new to it all, I was in a right mess & we didn't want to alienate anyone.
But that is water under the bridge. The new me will somehow get better service!
Have only been on MTX for 13 weeks, 15mg. But these damn knees .........
Thanks Polly. Hope that hand of yours settles down,
what your dr said is rubbish. When i went to hospital in oxford i had a tricky thing to sort out with nhs consultant. Couldntwait six months to see him on nhs so i saw him privately. A lot of consultants have a private practice. Make a lot of exrra money that way. Its not a good system i think but thats what is there. Hope you can sort things out
I can see how that could be tricky! I'm so pleased I asked this question as these responses have provided a reality check! I'd been expecting inherently complicated things to be simple! I'm wiser now - thanks Cathie!
Dealing with GPs with this kind of disorder can incredibly difficult. It really is outside their area of expertise, so you will either get GPs who don't know enough to be useful to you, or think they know more than they do (and thats also not useful). If you are on any of the DMARD type drugs, then your NHS should have a shared care protocol with GPs for that - google it (your area, plus "shared care rheumatology") and it should come up with a document that indicates clearly who has what responsibility, and when GPs should consult with the rheumatologist and what for. Some folk do have direct access to rheumatologist or specialist nurses for questions, but if you don't, then you should reasonably expect that your GP will act as the go-between - i.e. you ask the GP to report whatever it is you are concerned about to the consultant and get advice back. As has been said, GPs should not be changing DMARDs or other treatment without consulting with rheumatologists.
Something else I would expect of a GP would be that they would help with pain management if you need more than DMARDs - either by prescribing, or by referring you to Pain Management specialists. This is not something that a rheumatologist generally handles. Also you would probably need a GP to refer you to other specialists if you were having additional problems (like neuro), rather than the rheumatologist handling this.
No GP should refuse your request for either a second opinion within the NHS or a private referral, unless it really isn't advisable on clinical grounds (i.e if you were wanting to be referred for something stupid that there was no need or clinical evidence for). They might want to discuss your reasons, and what the likely benefit of this would be before they referred you though, and that would be quite ethical.
Yes, your GP should know what is going on. It makes sense that they know what treatment you are on, how it is affecting you, etc. But, like you, I really don't have a lot of confidence that GPs (highly paid as they are) are much more than "gatekeepers" for health services now. They just don't have the time to be able to get to know patients as people, and modern medicine definitely doesn't encourage the kind of "gut instinct" that old time docs used to have that led them to tying together a whole lot of different things to get a diagnosis, rather than reliance on single tests and looking at one symptom at a time in a kind of "speed medicine" system (think speed dating, in the medical field).
Wow! Lots of stuff I just did not know plus things I did sort of know but was too frustrated & irritated to express clearly or to really take on board.
I love the speed dating comparison, though what it describes is not good news for patients.
I will google 'shared care rheumatology'. You've also hit the nail on the head about other specialists. I need to tell a GP what's going on because there could be more to it.
It does seem to me, looking back, that most times when I've seen a GP over the last 10 years have been a waste of my time tho' the worst GPs make patients feel that they are the time wasters.
We're almost getting back to the time before the NHS when ordinary folk, anyway, would rely on certain women in the family to help with health problems, this site & others like it seem the modern equivalent.
Thanks so much!
I think it's partly about the time allotted with GPs which is getting less and less - so even where i live in a close knit community we don't have an out of hours service, GPs rarely do home visits and for many it's a brisk in and out job - there really isn't enough time to broach the bigger subjects such as a patient's mental health. I hardly dare ask for a prescription from my GP now - especially MTX - because he can spend five minutes frowning at the computer trying to get it to do as he's requesting! I know we can book double appointments in theory but in practice that always looks a bit embarrassing doesn't it?! A good GP is a first class gatekeeper and a bad GP is a bad case of speed dating maybe? I still think they should be good gatekeepers though on their salaries and we must expect this of them and if they fail then give 'em a row! My own GP is very good but he does like to think he knows more sometimes - which is when I tend to make appointments to see the other two to give him the message he's not actually God! TTx
• in reply to
Yes, I've sometimes wondered about those double appointments but have never dared ask for one. I think I should emphasise that I'm not asking for much, a polite & helpful 10 minute appointment would be enough.
Have just phoned Rheumy Nurse - what a contrast! She suggested I go back on steroids & when I said I did not want to do that & explained why she said 'Yes, I quite understand that.' The few times I've spoken to GPs since I've had this thing they don't say anything like that. They say things like, 'Ungghhhherrrrghh! No of course not! No!' etc. I really wish I was exaggerating.
Oh so do I Christina - it really sounds appalling I think they all need neutering (if they are all men that is?) perhaps you should go in armed with the relevant untensals? Sorry for that but my OH is coercing me to get another dog for my 50th and neutering is one of the bullet points I'm being given by the breeders while doing my research! Xxxx
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I love my rheumy team and my GP
First rhuematology appt as my GP thinks I have RA
Letter from GP
Can I decide what treatment I have?
Trying to get a diagnosis, what can I do?
