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Discussion Starter #1
I was diagnosed by my rheumatologist two weeks ago, and was asked to wait a couple of weeks before contacting my GP who would prescribe my medication. The rheumy gave me NO information about lupus at all, not so much as a leaflet, just that my GP would look after my long term care, only referring me back to the rheumy if there were any significant changes in my condition. Imagine my surprise to receive a letter from my GP this morning saying, we got a letter from the hospital, your prescription is ready for collection. That's it. No make an appointment with us to discuss your care plan, have you got any questions (er, yes a few).

When they say the NHS is a postcode lottery, they're not wrong are they? I feel so isolated and alone, or well I would if it wasn't for forums like this. I just think it's fundamentally wrong that my education of this illness is self discovery, and some of the things I'm reading are frightening. It's totally unacceptable.

Well it's time for me to take control. For a start, I'm changing my GP tomorrow.
 

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(((alimonkey)))

Sorry to read that you got the brush off.
Maybe your GP thought your rhumey had gone over and answered all your questions?

When I was told I had lupus was by the GP telling me on the phone.:eek: What a shock that was. Although I had an idea on what it was, my brother has sle too. He is still working.

Maybe you could give them a ring back and tell them you need some questions answered?

Remember to be careful what you read. There is a lot of out dated information out there on the internet. I know being first diagnosed is a scary roller coaster ride.

Love,
Lyn
 

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:wavesmile:hi ali

well my quack of all quacks wasn't over lupus. it was when i was diagnosed with hepatitis c, after throwing a hissy fit fot the test as i knew i had something going on (tho' my liver enzymes did say anthing) well he ran the hep c test. he didn't even call me...he sent a sticky note thru the mail to me saying "you have infectious viral hepatitis c, you need a gastroenterologist. how's that for recieving a potentially fatal diesease??? :eek: .

any way just thought i'd share ....:p

hope you can find someone who will actually help you and actually work with you.

take care and feel better
hugs and kisses
 

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Discussion Starter #4
Seriously, why do these people bother going into health care if they've got no interest in patient care? It never ceases to amaze me. I can't believe that these people think it's acceptable to tell someone they have a life changing condition and then don't bother to help them understand how to manage it. I'd never even heard of it a couple of months ago. I was reading Dr Wallace's book tonight and it just made me laugh. His style is poles apart from the laissez-faire attitude of most of the people I've dealt with.
 

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Hi Ali

Just to warn you - but you may find that your GP knows little or nothing about lupus. It maybe for this reason that he didn't propose a consultation.

Everyone (including my Rheumy) has told me that it is important to have a GP to deal with day to day matters between Rheumy appointments. As mine went back to Australia 6 months ago, I have been trying to find another. The first one I tried seemed totally perplexed as to what lupus was and what tests to do in response to the Rheumy's request that she monitor my kidney function. When I told her the tests to perform she proceeded to take my blood and bruised my arm so badly that it was black/deep purple from wrist to shoulder for two weeks.

The next one told me that it was up to me to find out as much as I can myself about the condition and to ask for whatever is required. When I asked perhaps there was someone in the practice who had experience of / an interest in lupus, she said not really - it is in her view a very rare disease - although she did have another patient with it "by the name of "****** *******", who had written an article about the value of exercise to those with lupus" and "did I know her?".

I'm still without a GP. Thank goodness for this site!

Sorry to say it - but it may be necessary to save up your questions for your next Rheumy visit!

Take care,

Merle
 

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I would ring up my gp and start asking some questions as your gp might think that the rhuemy went over things with you. Sometimes it is a case of the right hand has no idea what the left hand is doing. I could be wrong but I would hate for you to loose a doctor over a misunderstanding.

I am not sure how it is done in other countries, but in the united states the rhuemy is the one that handles your meds for things like lupus. My gp only does the pain control but I have both talking with each other so we can all do what is best for me and them. It does not sound like your rhuemy did a very good job either with just saying your gp will give you meds.

My first words would of been for what? What I am I being treated for? I need to talk to someone about all of this when can I do that. If I was not given the chance with the rhuemy than maybe that is something to call the gp with as it is clear he got some kind of report on you.

I hope you think before you act, and you do what is best for you. I will support anything that you do, and am here for you. I hope that you start to feel better soon.
 

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Hi there Ali,

I think you should change GP if that is what works for you. You have to be comfortable with the doctors that you treat with and it sounds as though your not.

Also I tell folks newly diagnosed to go out and buy "The Lupus Book" by Dr. Daniel Wallace. Written in laymans terms and a must have for anyone new to Lupus. When your done you may just pass it to family and friends as well.

Hope to get to know you better and good luck moving ahead.:wink2:
 

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Hi ali,

I wouldn't be too quick to change GP's tomorrow. I would go and make an appt with this one and see what your Rheumy said in the letter and explain to him that you have had absolutely no information on your condition from the Rheumy. In most cases (certainly in Australia) the Rheumy is the one to take the reigns with Lupus. From what I gather that's true in most places. GP's are just there to fill out repeat prescriptions in between specialist visits, run standard bloods if required by the Rheumy and to treat uncomplicated infections etc should you get one. They just don't know enough about Lupus and they should not be expected to. That's what specialists are for :wink2:

I find it odd the Rheumy took that stance really, but it would be interesting to see what he wrote in his correspondence to your GP.

:hug:

love
Lily
 

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I'm with Lily on this one - it more the rheumy I'd be worried about than the GP. My GP practice is useless, so they give me prescriptions and that's all I trust them with (and they even get that wrong sometimes!). All of my other care is sorted via my nephrologist (my main doctor) and the hospital. Do you have any kind of follow-up appointment with your rheumy, because I really wouldn't expect too much from any GP (unless you're very lucky!)

:hehe:
 

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Discussion Starter #10
I would make an appointment with my current GP if I could, apparently there are no appointments until the end of May because they're changing their booking system. Which is another reason for me wanting to change - their 'customer service' is awful. Last time I went to the GP about a month ago he just wouldn't treat any of my symptoms as he said he didn't know what they were dealing with. Er it's called pain, they might have taught you about that at medical school.

Went to speak to a nurse practitioner at the health centre this morning. She was quite helpful - despairing of the rheumy and GP. She printed lots of stuff out for me, told me they'd had the letter from the hospital, didn't say too much about it. I have a follow up appointment with my rheumy in October, 6 months away.

I think I still might change my GP - my Occupational Health Nurse at work has given me the names of two good GPs in my area. I also have my prescription now for Plaquenil so time to start popping the pills.

I've got Dr Wallace's book out of the library. It's really helpful, particularly the latter chapters. It's been a bit of a steep learning curve, but thanks to this place I'm getting there.

Thanks everyone :calm:
 

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I wouldn't set about changing my GP right now. See how he reacts to situation and the rheumy's conduct and how helpful he is to you. Right now you need his goodwill: you need to get your test results as the first step to taking charge of your health. You also want the medications.

( In the UK it is usually the GP who actually writes the regular prescriptions following the consultant's/ specialist's recommendations. That's because it is the GP practice that pays for the medications. They organise their own budget)

I would explain how disappointed you are not to get any information at all from the consultant, or as I gather from what you say,no idea what meds have been prescribed or advice about getting help and good information. That is inexcusable.

I think it is amazing not to be given a follow up appointment, for one thing to check on your progress with the meds. GP's generally have no special expertise in lupus. Mine happens to be very interested in it and often asks me to talk to GP students about it. He is also a very good GP and most helpful and willing, but I would say he is the exception

I wonder if RA patients get the same offhand treatment.
You never know if there haven't been widespread complaints about the local rheumatology services. You might also want consider asking for a referral to a specialist centre, Leeds or Newcastle, considering the unsatisfactory nature of the services offered locally.
I would also join your branch of LupusUK and make some contacts there

I'd say that most of us have got our information from online articles and literature and support forums and information sites like this one

All the best
Hugs

Clare
 

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wow I wonder if the quacks are related. That is strange that the rheumo doesn't follow you - thank goodness for this site is right !

The good point,you are getting on meds and hopefully start to feel better.

I wonder if you call the rhemo or gp and say what happened and what about your care plan and explain about the disease ....maybe that will brighten their eyes that someone needs to change the process a little to help patients out.

Nothing really ever ceases to amaze me.
 

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Discussion Starter #13
I still can't decide what to do, and under normal circumstances I would totally agree that it wouldn't be a good idea to move at this time. I just do not like my GP, the doctor I used to see isn't at the practice any more, I hate the other doctor. There have been loads of locums in place of my normal doctor. There's been no consistency. The receptionist staff are very unhelpful and often rude. I have my prescription so I don't need my GP for anything now. OK, let's say worst case I don't get on with my medication - I can't make an appointment with my current GP anyway. I could be with a new GP by this time next week, and if I inform my current GP that I'm changing my notes would be transferred in less than a week, and they can access my computerised record in the meantime. I really don't see it's such a big deal. I want a GP I get on with, respect and can talk to, I don't get that where I am now.

Maybe it's my own fault I didn't get anything out of the rheumy, but she kind of caught me off guard. I really didn't expect to get a diagnosis, it was only my second visit. She just came right out with it, she did tell me I would be put on Plaquenil, but I was in such shock I didn't really ask her anything. As I said in my earlier post, I have got a follow up appointment in 6 months, but that seems kind of a long way off, is this normal or should I have a follow up sooner?
 

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It is not abnormal to only see your rheumy every 6 months. Usually your GP will handle all lab work and medication in between. If your condition escalates you can always call to get an appointment to be seen sooner.

Good luck with the Plaquenil.

Take care,
Lazylegs
 

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Discussion Starter #15
I've registered with a new doctor. Seems like a really nice practice and they have appointments on the day you ring, and you can have a telephone consultation too. My registration should be complete tomorrow.
 

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Good luck with that Ali :)

It's a hard decision to take but sometimes we feel we have to.

Katharine
 

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Hi Ali

I made an appointment with the pharmacy in Tescos to have a chat about my meds:) they were really good explained loads she had loads of knowledge on sle and was reassuring.:) At the time I was against meds,:eek: but without them I cant manage.:( Come round to the fact I need them.:)

sounds like u got your self a good GP well done hope your notes come through quickly

dixy
 

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Ali, I think at first yr post seemed to read like a reaction to the whole situation but after reading more I think you were right to move GP's and have done it for the right reasons.

I actually got no explanation from St Thomas hospital other than "it's not going to kill you" I have a follow up in over a yr. I think the consultants are so busy that they leave it to the GP and the GP doesn't know so he /she leaves it to the consultant. Not saying it's right :(

I realised after diagnosis that I couldn't have coped with it all or understood it all without this forum. How lucky we are to be ill and have such an amazing thing as the internet to connect us to eachother.....

Hope the Plaq sends you some relief soon xxx
 

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Discussion Starter #19
Thanks pollianna, I feel so much better for having made the decision to move, I'm just reading the welcome pack and the facilities and clinics at the new GPs are so much better, they even do Saturday morning appointments and telephone consultations. And they have late afternoon surgery until 6pm. Plus there are so many GPs in the practice, if you're prepared to see anyone they guarantee an appointment that day. They even have their own dispensing pharmacist on site. Fantastic! My named GP is one of the ones recommended to me by the Occupational Health Nurse at work so we'll see how it goes. Can't be any flipping worse!

There's been a real gap in my care. The rheumy caught me so off guard I was dumb struck, I guess I doubted that I had anything really wrong with me. I just froze and when I did ask about my other tests maybe she thought I was questioning the diagnosis. Surely though they could have some information booklets or something that they could prepare for patients when diagnosed with conditions like this? My GP gave me the impression that their role in it all would be to dish out the smarties at the rheumy's instruction, I wanted a bit more than that. I guess this episode was the straw that broke the camel's back in terms of me reaching the decision to register with another GP.

I am getting support from other areas though. This forum and all you guys are so supportive and helpful, I literally don't know what I would have done without it. I've also started seeing a counsellor which work are providing, and I see our disability co-ordinator at work on Thursday. The Plaquenil is making me feel a bit nauseus and a bit spaced out, I might try taking it just before bed, then the nausea might hit while I'm asleep. Could really do with some more effective pain meds and anti inflammatories as the pain in my legs and feet is really bad at times, particularly night time when I'm tired.

But on the whole I'm OK, I'm coming to terms with things.

ali x
 

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Pollianna
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ali my legs are very bad too....I use a cup of natural yougurt to make sure i don't feel nausea. If you try it at bedtime the yougurt helps sleep too....So glad the surgery is better :hug:
 
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