Hi Jenni,
Sorry to hear of your problems - it sounds awful.
I have only been diagnosed a few months, but am moving in the right direction so to hear your news I certainly feel for you.
What shocks me is the follow up in January 2013 - surely this goes against the NICE guidelines?
A student of mine has a girlfriend studying medicine and she told me to look on the NHS site for NICE guidelines to see what the recommended follow-ups should be - perhaps someone on here would know the actual address? If I find it I will repost.
Good luck
Tina

Hi Tina

The standard follow up for rheumatology appointments is 6 months, occasionally 12 months if the disease is long standing and well controlled, it's up to the judgement of the individual consultant and the needs of the patient. Changes in Rheumatoid do not normally happen overnight, unless due to an exacerbation in which case a more urgent appointment can be sought. The number of Rheumatoid patients increases steadily and each one is a case that will need continued monitoring, for life in most cases. The number of Rheumatologists is not increasing sufficiently to meet demand and hence the problem with appointments.

NICE guidelines for Rheumatology

Anyone with special Rheumatology needs ie severe RA, co-morbidities, significant flare, uncontrolled disease will normally always be seen as soon as possible, in my experience.

Hope this helps to clarify. Jenni has 'red boots' ... she gets seen when needed!

Lyn x

Its interesting to see how different depts are set up isn't it?

You can, with a fair wind and a pro active gp leave a message on the rheummy nurse answer phone. There is no out of hours cover for rheumatology any more, so don't get sick near weekends!
If you leave a message, within48 hrs they ring back and you get popped on the emergency clinic list. This is normally run by junior dr team- there's no point ms seeing one of these so I ask to be seen by a registrar or consultant or at least have one in the dept while I'm being seen so they can be summonses to help

To see my rheumatologist, despite having failed the meds and having largely uncontrolled disease is about 12-18 months. Even then it's his 'team'.

Because I've needed helps often I've ended up being admitted. I know I've been ever so poorly but it's been a relief to see him on his round.

The other thing is my rheummy team are lovely
I like all of them
But it's getting to see them

It used to be I could ring the rheummy nurse who would sPeak with me, see me, book an urgent
Appt but now they have no contCt with the consultants.

Even seeing her is tricky to get in
They always tell me it needs to be 3 monthly appt but I end uP being admitted long before then! I'd love to last as long as January

Perhaps that could be a next goal!

Are your appointments even harder to get?

My consultant gets fed up seeing tennis elbow when he'd rather be treating 'interesting rheumatology'
Apparently the 'new cAse' rule stops him doing this

Must say, I think my rheumy team are pretty good now that I know them fairly well. I can speak to the nurse on the day I ring, as long as I ring early enough. I do not see my rheumatologist very often, but have now found that if I actually ask to see him, then I get an app. fairly soon. He did tell me on one occasion, some time ago, when I was pretty bad, that I should have written to him to tell him how bad I was and he would have seen me!!! At the time I was a fairly new comer to R.A. and was rather surprised to say the least! Thankfully I have not needed to do this. My appointments do tend to be with the nurse, but she will go off and discuss things with the doc. and he will tell her what to do, or sometimes he will then come in to discuss options with me. My app. are 3 monthly, but return to 6 monhtly when better controlled. Reading other comments, I can see that I am looked after pretty well!Best wishes all, Zena x

hi Jenni,

i know you've been admitted so many times which is such a shame that you have to go through this,

since i was diagnosed over two years ago my appointment's are made as i leave and are for 3 to 4 months.

we have two Rheumy Nurse's, one i'm assigned to but both can help me .. if i phone and there's no one there i normally get a call with 48 hours unless one of them is on holiday, but i will get a call back eventually with an apology.

it really seems a lottery as to where we live which NRAS did say when i went to a meeting when i was first diagnosed.

sending my best wishes to you Jenni,

Suzanne x

P.S. and like Paula i think there's appointments open on a Wednesday for emergencies, i have also seen the Nurse on this day if needed in between appointments.