How long do you have to wait for your next NHS Rheuma... - NRAS

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How long do you have to wait for your next NHS Rheumatology appointment?

Frankiefocus profile image
43 Replies

Hi, this question is just for the people living in the U.K and using the NHS. How long do you have to wait for your next Rheumatology appointment? Mine is every 4 months.

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Frankiefocus profile image
Frankiefocus
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43 Replies

Frankiefocus Had my ist appointment with Consutlant and then 2 weeks later nurse then my next 3rd is 8 weeks at present and been told it should be 3months 6 months then annual unless I hit issues. Living Lincs area.

helixhelix profile image
helixhelix

When I was first diagnosed I had very regular appointments, can’t really remember but about every 4-6 weeks. And got seen if urgent things popped up too - my wonderful rheumy squeezed me into her lunch break to take fluid out of my knee one time.

Once I was stable the appointments spaced out to seeing rheumy at 6 months and nurse at 12 months - i.e. seeing each of them once a year. I would always hang around at the hospital after my appointment to get the next one booked in.

Kalimers65 profile image
Kalimers65

6 or 7 months but my next one is 4 months as the consultant is worried about my bad flare. I’m in Bristol area.

KittyJ profile image
KittyJ

When first diagnosed and starting new meds every 3-4 months then every 6 months. Once stable on meds yearly. Back to 6 monthly since starting biologics but nowadays appointments are often cancelled and if I think they’re too far apart and I need to be seen I get myself put on a cancellation list for a short notice appointment. I’m in Cambs.

Mmrr profile image
Mmrr

There has been no pattern, as I've always had an issue and been seen sooner, but probably every 4 months.

wishbone profile image
wishbone

Last saw a rheumatologist in June 2018 followed by an appointment with the rheumy nurse in January of this year. Recently received an appointment for next January.

Anyone would think I'm in remission which I ain't. To be fair my health board has been 2 rheumatologists short for nearly all of that time. That, and they appear to have run out of ideas what to do with me. :-O

Kels1974 profile image
Kels1974

I'm waiting for my first rheumatology appointment

teakbank12 profile image
teakbank12

I'm in Lincs and it took me years for GP to finally refer me.

Had a couple injections in ankles and knees then after scans and xrays told its mainly osteo which they can do nothing for and to take pain patches along with other pain meds and referred me back to GP.

Same happened with ENT as all consultants are trying to offload patients.

girli1111 profile image
girli1111

Berkshire...and 9 months foe me

FRreedman profile image
FRreedman

Mine are between one and four months depending on how I am and what the consultant is doing about it.

Brushwork profile image
Brushwork

Sadly, I think it depends on lots of things one being where you live in the UK.

When my RD is unsettled I have appointments every 3 months, but the norm for me in the Scottish Highlands is 6 months.

When I lived in Lincolnshire it would be 6-8 months (sometimes longer), no matter how active my RD was. Then could be waiting at the department for up to an hour after appointed time to see Rheumy and then get 5 minutes.

Here, you are never kept waiting in the department for more than 15 minutes and your appointment is 20 - 30 minutes. It is a teaching and research department aligned to the University, but my experience here is that you are never kept waiting in waiting rooms for more than 15 minutes without a good explanation...

CagneysMum profile image
CagneysMum

Every 2 months for first 6 months then 3-4 months as got better controlled with drugs, and now every 6 months. They have emergency clinics regularly that I can access in case anything changes and a phone helpline.

Scottishlad profile image
Scottishlad

I am in the Grampian NHS region with the RA team based 60 miles away in Aberdeen. I used to have to travel to Aberdeen. They now have regular clinics in Elgin.

My RA is well controlled I am scheduled to see my consultant and biologics nurse once a year six months apart. The appointments sometimes slip by about a month.

I am assured that if I have problems I will be seen earlier if required.

Tillie20 profile image
Tillie20

I Am in Chelsea every 3 months with nurse and 3 months with Rheumy registrar .

JEM95 profile image
JEM95

I’m in Oxfordshire, I see either the nurse or Rheumy every six months. When I was first diagnosed it was every three months, but am relatively settled now. They have a super email system, with replies coming almost immediately.

Sarahg62 profile image
Sarahg62

Good morning. I have a 6 month wait. I see the rheumy nurse and consultant each once a year.

Fruitandnutcase profile image
Fruitandnutcase

I’ve been seeing a rheumatologist for five years and I have only ever gone once a year.

I have never seen my named rheumy either. I have seen one rheumatologist twice in a row and different rheumys on the other appointments. I haven’t ever seen or been introduced to a rheumy nurse. I have never had to wait long when I get to my appointment.

I take 200mg hydroxychloroquine, every day and if I have ‘odd’ aches and pains I top up with an anti inflammatory.

I went totally gluten free when I was diagnosed five years ago because I have quite a few other autoimmune conditions and I think that is what seems to be keeping my CRP and markers for other autoimmune conditions down.

Should add I’m in Cambridgeshire, I attend a big teaching hospital and the rheumy I saw recently said in my copy of her letter to my doctor that the hydroxychloroquine was keeping me in remission - long may that last!

KittyJ profile image
KittyJ in reply to Fruitandnutcase

Interesting Fruitandnutcase, I think we are at the same hospital but are seen at differing intervals and you have never seen the rheumy nurse, maybe it’s because you’re in remission.

Fruitandnutcase profile image
Fruitandnutcase in reply to KittyJ

Wonder if it is - name begins with A. I see a nurse to be weighed and measured for height but that’s the only nurse I’ve ever seen and I think though she works in rheumatology she isn’t ‘the’ rheumatology nurse.

I thought it was because I wasn’t very bad compared to a lot of the people they must see. . My GP fast tracked me the first time I saw him. I said ‘but my hands / knuckles aren’t deformed ‘ and he said if people were treated properly early on then that needn’t happen.

I’m seronegative and after my last appointment I got the feeling they were going to drop me as a patient but the lady doctor I saw this year said in her letter to my GP that the hydroxychloroquine was keeping me in remission so that was good so I’m still there which is good because my hands still hurt and they lack strength and I have to use plug pulls so they are obviously not all that great and my body is awful in the morning and I’ve got incredibly dry eyes - one of the doctors I saw said to my GP - Lupus??? Don’t think it’s that though, I think the dry eyes go with my Graves‘ disease. I’m glad I’ve not been written off.

I still feel like a bus has driven backwards and forwards over me while I’ve been sleeping and I can’t bend , make the bed, pick stuff up off the floor etc for the first couple of hours in the morning. I’m a real slow starter.

My appointments are never at busy times, it always feels strange - almost like I’m visiting visiting a deserted village - until I go for the blood test which as usual is totally packed out.

KittyJ profile image
KittyJ in reply to Fruitandnutcase

Yes, big teaching hospital beginning with A. I too see a female rheumy, maybe the same one. You’re lucky to go at quiet times, they’re always running very late when I go. I don’t know why they have such a small blood test place for a hospital that size. Your GP was right to want to get your disease controlled quickly, you really want to avoid joint damage if you can.

There’s definitely at least a couple of rheumy nurses in clinic, I can’t understand why you haven’t been given their number. It’s good that you are in remission though 😊 although if you are still struggling to get moving in the mornings it might be worth mentioning that to them next time or your GP as that doesn’t start your day off well 😞

Lyneal profile image
Lyneal

Hi, I have just phoned my consultants secretary and she is making me an urgent appointment. So try that. Or phone your RA nurse and she what she can do for you. Hope this will be of some help.

Totally depends of the results of my blood tests. I have to have bloods done every 3 mths. Once the consultant has reviewed them, my apps can be anything from 3/4/6 mths.

Since I was diagnosed, just over 15 yrs ago, it started at every 6 mths, but then for the past 4 years, my inflammation levels and pain has increased.

As my feet have become the worst affected.

I live in Essex.

nomoreheels profile image
nomoreheels

Every 6 months for me, but it sometimes stretches to 9. Only see my Rheumy once a year, it's an SpR otherwise. I do have access to Rheumy nurses at my local (closer) hospital at midway point, so 3 months prior to next appointment, but tend to only use those if absolutely necessary. I'd be quite happy if I was seen by my Rheumy every 4 months, I’d been used to being seen every 3 months without fail before returning to the UK.

Ssmart profile image
Ssmart

I’ve seen my rhumy TWICE in 2 years.... they always say see you in 6 months but is a year as department overstretched and waiting lists are huge. I have a nurse to call for advice though.

Tiverland profile image
Tiverland

Every 6 weeks first 3 months now 3 monthly. Disgnoised in April 19.

Troygirl profile image
Troygirl

I see my ra dr once a month. Have been for almost two three years because no ra medications have worked! I live in America.

About every 4 to 6 weeks for first 5 months (Jan to June), plus an emergency appointment with another doctor in the team when things were very bad. After June it was 10 weeks to early Sept. (Would have been 8 weeks but I was on holiday). Then I was declared to be in remission, so next appointments are after 3 months and 6 months. 3- month one is with a specialist nurse (never met one yet, but could have done with one) and 6-month one is with consultant.

As I understand it, it all depends on how bad - or not - the RA is when I see the consultant. You can see she has adjusted the frequency of appointments to how well things are going. I can also contact a rheumatology pharmacist, who will get advice for me from the consultant if necessary.

I am in Salford and attend a big teaching hospital. I imagine there may be more issues with staff shortages in out of the way places, leading to fewer appointments.

Mumcon profile image
Mumcon

I used to be every 6 months but now nearly yearly, and I see nurse in between

Lyndy profile image
Lyndy

They always say four months.. your appointment will be sent to you in the post, but it never arrives.. so I ring up and ask for one. This is usually a month after my phone call xx

Peggy76 profile image
Peggy76 in reply to Lyndy

Hi Lundy.

Totally understand where your coming from. I’ve ckd so can only have injections 2 x a year & cannot take antiflamatory tablets s only paracetamol. Apart from my knee &hips I have osteoporosis in my spine &ribs take a 5mg dose of oxynorm 3 x daily ,to no effect . I’m 81 & feel I've had enough of pain. So good luck keep after them for your appointments . Wishing you all the best.

Peggy x

Happygranny1958 profile image
Happygranny1958

At beginning was every 6 weeks, then every 3 months, 6 months and now once a year unless problems.

Waffs profile image
Waffs

Hi Frankiefocus, every 3 months to start with then every 6 months once initial flare had settled down. Still having blood tests every two weeks as they have increased my methotrexate to 20mg and started me on sulfasalazine. However I am able to ring up and ask for an appointment if things are getting worse. Hope this helps.

eastbournelady profile image
eastbournelady

my next appt is booked for next feb a year from last one!!! i am sure she said I would see consultant after 6 mths but never materialised.

Hodc profile image
Hodc

Mines is 4months too

My next appointment is this coming Tuesday thank goodness. My previous one was in April.

Carol41 profile image
Carol41

Hi Frankiefocus

Over the last 44 years treatment , drugs injections, hospital stays and operations etc. I have been told that I no longer 'need' regular appointments but can ring the Rheumy. nurses if/when I need help. Recently I rang because apart from my now disabled condition I am in constant pain and cannot use my hands. The nurse told me that the damage is done - use Morphine patches from your G.P.

Typsey profile image
Typsey

Hi Frankiefocus. I live in Shotley Bridge but go to Durham for Rheumatologist. I waited nearly 2 yrs for an appointment as rheumatologist left and they couldn’t get a replacement. That was a bad time.im currently being seen by specialist pharmacist. So far so good onToci.

Chance_chance profile image
Chance_chance

Usually appointment 6 monthly in Devon and can ring help line in between to speak to a rhuemy nurse

Creakywrists profile image
Creakywrists

I went every 4-6 weeks for the first year or so, after which I went to a different clinic where I’m seen every 6 months. It usually alternates between the rheumatologist and the specialist nurse.

Whoever sees you in the clinic tells you when you should come back and who you should see, and you make an appointment on the way out with the receptionist. I’m in Scotland.

Simon14 profile image
Simon14

Everyone have different treatment some 3 months other 6 months usually between 3 months to 6 months

Gjkas profile image
Gjkas

Every 4 months is about average i think. Depends on how bad your Rheumatoid is when you see the Doctor.

Sometimes when my Rheumatoid have gone into Remission, i might not be able to see him for 12 months.

But when it flares up again, my Husband rings the CLINIC up and i then have to wait about 4 weeks..

Wish that they had a WALK IN CLINIC.

Raven15 profile image
Raven15

I haven’t seen a consultant in over 18 months but do see the specialist nurse every 6 mths (or as near as they can manage it!) This seems to be the most common route now looking at other posts in this thread

auldreekie2 profile image
auldreekie2

I see 2 doctors at the Rheumatology clinic, I stay in Edinburgh. our clinic is really busy, you could be sitting there about a hour before you are taking, but I know that before I go.

What I do notice since I got RA you have to do a lot of chasing up, with the medical team, Doctors, hospital's, I think because the see that many people. but they do look after me well.

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