Hi everyone, sorry its me again!!! If you've had enough please feel free to pass this one over. I went to get bloods done at hospital this morning, having left a msg for the nurses to call me on Tuesday. While having bloods done, I told the nurse about my pain and swelling etc and that I had called and left msg. She thought they would have called back by now, so suggested I call again today as no one available as all at St Thomas. I wasnt very happy, but what can I do?
When I got home I called them again, asking for a call back a s a p. At 3.20 I had my GP appt, I explained what had happend and she said that if the clinic is so booked up the nurses can help, so I then repeated that saga. I asked to to prescribe something for now, and she said "I cant do that, it has to be the specialist, as if something went wrong I would be struck off" I said "I thought GPs could prescribe until seen at clinic" but she still refused. She offered to write to a different consultant as she said that I dont seem to be getting on very well with the team!!! Thats an understatement. I asked how long that would take, and she said around 8 weeks!!! So may as well leave the March appt then!! She also gave me a card for a private consultation at the London Bridge Hospital, which is just around the corner from Guy's.
Arrived home at 4 and one of the nurses finally called, I explained the problems and he said, "Oh if you add another folic acid that may help, with the side effects of mtx" (nausea) which I get all weekend after taking the mtx on Friday. But you need to be seen by Laura the specialist nurse, who isnt available at the moment, but I may be able to get her to call you on Monday for a chat. I said that I dont want more mtx added, as its pointless and doesnt work, he said that is all the nurses can do is add to a drug that you are already on. He asked what painkillers I am on and I told him tramadol, he said to add ibuprofen, which I have been doing now for 2 months, also co-codamol, again I already do, if not paracetemol, and none of it works. I asked why I cant have another DMARD added or a depo injection, he said its up to the consultant, they have a plan for each patient, and he doesnt know mine. I asked about the depo injection, and he said I have already had 3. I said I have had the normal steroid one, not the depo, no he said its all the same!!
He then said they can get my notes and get Laura to call me hopefully on Monday. As you can imagine, I am not at all hopeful!! I feel like saying, dont even bother!! Will call about the private consultation on Monday, and find out fees etc., cant believe they can do this!!

Hi Barbs
sorry hun such run around,the extra folic acid would help with side effects thats what gp did for me in view i told rheumy at next appointment.
yes heard the pirvate hospital near guys,funny enough my hubby foot surgeon does private work there.
id checked it out online so as to see all his crudentials before spouses operations.

they have a website it u wish have look see who they have as rheumy team there.
gr so frustrating for u,glad gp said option letter different rheumy team for you.
what ever u decide never ahd enough of you hun.
u take care.

hugs melly

Dear Barbara,

My personal opinion on reading all this is if you carry on with all these people they will help make your RA worse NOT better!

I have had RA for SO long now and from what I can decipher from reading this is that you are with the wrong people! You need to start ALL over again, be it with a dfifferent GP and a new hospital where the nurses communicate properly with the rheumatologists and know what they are talking about.

As for a GP declining to comment upon certain treatments for RA this is understandable but then they should be able to arrange for an emergency NHS appointment if their knowledge is really so poor.

I know this may sound a little harsh but these people are only hindering you in gaining decent health care and I would scrap the whole lot and begin again.

If you're in London I was recommended a rheumy called Dr Andrew Cope http://www.kcl.ac.uk/sch...tres/cmcbi/groups/cope/ by a Dr friend whom we greatly like and trust. He is (I think) at UCL and excellent.

Love,
Amanda

Hi Barbara

No we haven't had enough- I'm sure none of us think that. It's important that you are able to share these difficult times. I'm horrified that you are being given the run around like this at a time of need. If they are so busy then maybe it's because RA is on the increase and the NHS doesn't have the resources to deal with it.?In which case it needs to be addressed. I've had 2 appointments cancelled in succession and I'm beginning to think maybe it's the same in my health authority. I'm lucky that my need isn't so urgent although I'm taking paracetamol and diclofenac every day now and it doesn't seem to be helping much. Sorry to rant- it makes me so angry. Especially if we have to consider going private!oops- sorry- getting on my high horse again!
I think Amanda may be right- time for a change, although that can take time.

I hope things can get sorted for you soon

Take care- hope you can get a good rest over the weekend

Maria

Don't be daft! We haven't had enough - but you have, will be thinking of you on Monday.
There's some good advice here from people who know your location better, hope something gets sorted very soon.
Take care, try to rest and dont ever think theres no-one to listen - there's LOADS of us!
(((((Love and Hugs))))) from Liz xxxxx

This really isn't fair, Barb - my heart goes out to you. When you feel absolutely at rock bottom the last thing you need is to have to do battle with the idiots who are supposed to be caring for you.

Everything crossed for a good outcome on Monday.

...and of course we are not fed up with you - that's what the forum is here for - to help and support each other.

Lots of love
Jeanxxxx

Dear Barbie, I read your post and agree very much with the other replies that you have had.
Having this disease is bad enough without having to cope with a team who appear hopeless.
If we are given a medication to take and it is making us ill then prompt expert attention is needed.
Wishing you the best of luck with getting good help for your problems.
Best wishes,
Fiona

Hi Barbara

I'm sorry you're having such an awful time; it's unbelievable really, isn't it? I can't believe, for instance, that your doctor won't prescribe anything. Mine will, and always tells me if I'm in increased pain not to wait for my next rheumy appointment but to go back and see him (the gp) inbetween rheumy appointments.

It does sound as though you need to change your gp and your hospital team if at all possible. Is moving to another area a bit drastic?

Anthea x

Hi Bzrbie

I can't add to anything that's already been said, but I just want you to know that I think you've been treated very shabbily. It is time to try something else, be it new GP or consultant, and different drugs. I should certainly look into other practices and consultants, even if it means going private, your health is too important for you to wait around to be seen and given the right treatment.

I hope you have better luck this coming week.

Lyn

Amanda, your in bnox is full cant post the msg x x