Does everyone have a rheumy nurse?

MissKat

Hello one and all

So, I went back to my doctor as the previously mentioned rash on my face is now all over my chest too :sad:

...and whilst re-prescribing me with more lovely duac cream said I should see my Rheumy nurse. To which I asked how to organise that, and he said I should have one - if I have a consultant I should have a nurse...?

He asked how I got my blood test results each time I went, and I said that I just saw my consultant each time... which I do, but then I haven't been for 2 months and have an appointment booked in June.

He was quite concerned that I hadn't had the results to my last blood tests yet, which I guess is a bit stupid, I didn't really think how I would hear what the results were :oops:

So, does everyone have a rheumy nurse? How does it work?!

MissKat x

Jo90

Hi MissKat

Hmm, another odd one for me too. I have only come across the rheumy nurses that are part of the hospital team once, when the consultant handed my appointment over to them - and they were lovely ! Other than that, I only know about them through the emergency contact card from the clinic - it includes a number for the rheumy nurses.
My bloods only tend to get done at my GP's prompting from my prescription requests and taken at my GP surgery.
I would be interested to hear what other's experiences are.

Jo
x

dreamdaisy

I have three, two are very good and one isn't . I see my consultant once every six months, in between I see a nurse. They work as a team at the rhuematology unit, and they have general nurses under them (the ones who do the meth stabbings and infusions etc). Needless to say I know them all by name and oddly enough they know me! It's always been this way since rheumatology drew the short straw and got lumbered with me (they tried to pass me off to orthopaedics but they didn't want to play). They also run the helpline. When I first began living at the hospital the helpline would return calls within four hours. Now it takes forty-eight, at least, I guess because they are over-run with patients.

As for blood test results, again never a problem. Bloods were two-weekly for years and I would get the meth booklet filled in when I went for my meth stabbing. Now I do my own meth but still have to collect supplies from the hospital once a month. Bloods are also monthly now, so I make sure that I get them done the week before I go to collect the junk. Simples. DD

sugarbuttie

The number for our rheum nurses is on the top of all my appointment letters. It is a helpline no. & usually you leave a message & someone gets back to you within 24 hours. I have used it twice - once to seek advice about shoulder pain & another time to arrange for a steroid injection.

The nurses are lovely - so welcoming & happy to answer my 101 questions. My next appt is with the nurses as opposed to the rheumatologist - think I will only see him twice per year.

If there is no helpline number on your letter, ring the hospital switchboard & ask them. There is bound to be a specialist rheumy nurse as they are the ones who do injections etc.

Let us know if you seek them out!

tjt6768

I saw my rheumy specialist for the first time a year ago march and for the first four or five visits it war just him I saw. The last time I went to clinic was my first rheumy nurse appointment, she was lovely, much easier to talk to than the specialist to be honest. Think I'll get my next appointment in the post, hopefully with the nurse..
I'm old hat at orthopaedics but this rheumy lark is still fairly new to me too, lol..


Best of luck..

Tony

ironic

Hi MissKat,
Yes I have a rheumy nurse and have seen her a few times; she is worth her weight in gold. She is so easy to talk to and takes her time to explain things. I was also given the number at my first appointment and it is in my green record book. When I have used it I leave a message and the call me back within 24 hrs.
I have my bloods taken every month at the doctors and they use the same system as Lynn’s. I can call off by blood record from the doctors early if I need to when my appointments fall in between monitoring. I also have to ring up 3 days after my bloods are taken just to check if there is action to be taken.
Hope this helps,
I x

cpontefract

heya, I only see my Rheumy nurse after the appointment with my consultant (every 3-4 months atm)
Theres a team of 2 of them, and they are lovely. they basically go through everything hes said make sure i understand etc
I also have a direct number to them with a voicemail so i can call them if theres any probs or concerns. And their really good at returning calls

madwestie

morning misskat,
i have a lovely rheumy nurse would i see every 4-6 months (i have only seen the consultant once in 4 years). she does all my appointments has upped my meds referred me for mri, physio, ot,xrays etc and is lovely.
We also have a helpline and you ring speak to a lovely lady who passes the messages on and the rheumy prctioner of your choice rings you back within 24 hours.
my blood are done at the gp's and i ring the gp's surgery a few days later for the results. I have been told by the rhuemy practioner that they monitor all blodds and will ring me if anything is wrong.

Tracey

tillytop

Hello MissKat

There are two specialist rheumatology nurses at my hospital and they work alongside the consultants. Usually, when I go, I see the nurse first who does the joint prodding and poking and then the consultant. Like the others said they also run the helpline.

Bloods wise, mine are done at the GP and I "fight" for the results each month because I know the GP barely glances at them and I like to know what's going on!

Sounds as if you do need to see someone sooner than your June consultant appt so, like I think other peeps have said, I would ring the rheumatology dept and ask. Or, since your GP says you need to be seen, perhaps he could follow up for you?

Good luck!

Love Tilly xxx

nanasue

Hello all, after reading these replies I've come to the conclusion that you are all very lucky. My rheumy dept: has one nurse who only works part time and is very off hand when you do have contact with her, she treats you like you're a nuisance and as for a helpline, that's a joke. If you do leave a message for her you either don't get a call back or have to wait 3-4 days. If I have a problem b etween appointments (which are usually 3-6 months) I just have to get on with it. I can't go to my GP surgery as they don't have enough knowledge to help me. Once I was in tears with the pain and asked for a steroid injection and she sent me away saying go to see your GP but they needed a fax from her, but she sent a letter which didn't get to them until after a long bank holiday weekend, to say I wasn't happy would be an understatement. I have complained (officially) but nothing has been done. So make the most of your lovely nurses and appreciate them, I wish I was lucky enough to be in the same boat.

Sue x

MissKat

Wow, thank you all for your replies... you all do seem very lucky as Sue says. It seems strange that my consultant never mentioned anything about the nurses to me before... maybe it's because I'm only just coming up to 6 months on treatment so as it's early days he still sees me each time?

I might call up the number I have, but (perhaps because it's a large London hospital) all I have is the main outpatients number on my appointment letters. Still, worth a try I guess!

My consultant is very good, a lovely caring sort of chap, and has always explained everything very well to me and answered all my questions. When I first saw him in rather a state, he said that he looked at me and thought "what would I do if you were my daughter? I'd be very concerned and put you straight to the top of the list", less than two weeks later I was back and being 'sorted'

I'm really torn because I moved 8 months ago, have changed my GP but am still trekking to the other side of London to see my consultant... for now though, he's worth his weight in gold I reckon

MissKat x

tkachev

I have a nurse too. She is midway between GP, who know very little about me, and consultant who specialises in rheumatology. My nurse she is very knowlegable and checks my joints and bloods etc.

Elizabeth

breane

Hi,When I was first diagnosed with OA and RA my GP arranged for me to see a rheumy nurse while I was waiting for an appointment to see a consultant.I'm lucky that I always see the same nurse.If I need to speak to her about anything I can leave a message on her phone and she usually rings me back the same day.When I do see her she fills in my blood card and does my Das score,although my GP will fill in the blood card if I ask him.I havn't had any problems regarding blood tests but if anything unusual cropped up,the nurse would ring me to let me know so I think I get a very good service from the rheumy dept. Breane.x

frogmorton

Never seen one!!

Mind you l haven't needed to, but have taken telephone advice before now.

I was given the telephone number when l first saw the Rheumatologist.

Love

Toni xx

stickywicket

I don't think I have one as such, MissKat, but there's always one around the rheumatology dept whom I've occasionally seen to have my rear end stabbed with steroids. I just see my consultant every 6 months. If ever I've had a problem in between I've rung the MTX helpline & they've sorted out another stabbing session.

julie47

Hi .....I don't have a rhummy nurse either.

Juliepf x

nanarose

Hi, I too have a rheummy nurse, two in fact who work alongside the rheumatologist.

I am due to see the rheumatologist herself for my yearly appointment as I have been seen monthly by the rheummy nurses who deal with all my medications and care, except for my bloods which are done at the Health centre.

I too have found them invaluable; in my case if you ring them, they are usually available and if not, return your call within hours. When I called them to ask if I could get a steroid injection,(my appointment with them wasn't for a few weeks) they called my doctor and arranged for it all to be done at my local Health Centre,to save me the journey - ditto when I had severe nausea, they told me what I needed to ask the doctor for, and if I had any bother my GP was to contact them straight away.

I too find them most sympathetic and they always have time to discuss your treatment and how you are coping. I got direct access to the podiatrist, occupational therapy, and physio through them.

They are an integral part of the Rheumatology service up here, and can dispense steroid injections etc as well, perhaps because there is only one Rheumatologist at my local hospital and not another one for 50 miles!

It seems yet again, that the care you receive doesn't seem to be the same over the country unfortunately.

caprica

Hmm well I see my consultant every 3 months usually and have never seen a nurse. When I first go in a nurse weighs me but they don't ask me about arthritis. I'm sure if I needed them though I could call?
I rang my consultant's secretary once when I was having a bad hand flare and she arranged for me to go get a steroid injection 2 days later and it was my consultant that did the injection.

So yeah..don't know much about nurses! Love my consultant though, she is very human, if you know what I mean.

salamander

I think it depends on which drugs you are on. If you are on mtx or anti-tnfs you have a nurse. If not, then you don't. At least that is the case in my hospital.