How long before you saw the specialist.I have an oppointment for October but i was told I have RA in July does this seem a long time?

[bexlt17]

[Hidden]

Well it does to me. I suppose if your symptoms seem mild even to you then perhaps there's no urgency. But if you have active disease or if your disease becomes more active between now & October and you have not yet been given any medication to control the disease (as opposed to pain relief) then I think you should try to get it brought forward.

I've become very repetitive on this site because I don't think it is possible to emphasise too often that I appear to have suffered permanent damage to my joints in just 3 and a half months. Apparently this is a bit on the fast side and might mean that I have something else, not RA, but so far my diagnosis remains sero-neg inflammatory arthritis.

Maybe you've gathered already that a lot of us here think that you need to get quite pushy with this disease & that if you don't ask you most definitely do not get.

All the best to you, I'll be interested to hear how you get on,

Christina

[Hidden]

I would give the hospital a call on Monday to see if there are any cancellations before your appointment. I have done that before now when I have wanted an earlier appointment sometimes it works other times not.x

[Hidden]

It depends if you are on disease modifying anti rheumatic drugs yet? Were you diagnosed by a rheumatologist or a GP? I had to wait four months from my GP saying he was sure this was RA to seeing the consultant. Then I was told it was inconclusive (because I'd been given a steroid injection while I waited!) then another 4 months for a proper diagnosis. I was put on Methotrexate immediately and then had to wait a further 8 and a half months to see the consultant again - which was in breach of all NICE guidelines. I did make a huge fuss though!

When our medical director wrote to me apologising for this situation he said it is normal to have four months between appointments for most NHS rheumatologists - at least until condition has stabilised with drugs - and then it might be for longer intervals.

If you haven't been put on DMARD medication for RA yet then you should really push to be see sooner. Most people don't sustain damage to their joints as rapidly as Feather/ Christina but nevertheless the earlier RA can be diagnosed and treatment begun the better. Hope this helps.

Tilda

[bexlt17]

i have tryed calling them for a cancellation and they said i have to get my doctor to write to them thats ok if you have a good doctor but i dont all he wants to do is inject my joints with quartazone (sorry about the spelling)

[Hidden in reply to bexlt17]

Would that be 'cortisone' i.e. steroids? As Tilda says, and as you probably know, they mask symptoms so effectively that if they are still working by the time you see a Rheumatologist h/she won't be able to see what is really going on.

But I think that doctors sometimes push steroid injections on people out of sympathy as they can provide such relief. I can't see what the problem is with a little letter asking to get you in on a cancellation (tho' GPs drive me bonkers!) & I personally think you should try again. You could try taking your husband with you if you haven't already, lots of people seem to find that such support sometimes does the trick!

[helixhelix]

The NICE guidelines are that you should be seen within 6 weeks for the first stage of suspected RA. Perhaps you could point that out to your GP? But sadly I think your experience is all too common. That doesn't excuse it, but just shows the enormous lack of rheumatologists. I've just been told that I can now only expect 2 appointments a year, when I was getting 3. It's rotten, but may not be deliberate. Polly

[earthwitch]

Targets do vary between different NHS areas, and even where they state the number of weeks, most places qualify that by saying that they only expect 90% to be within the target time (so 10% could be much longer waits) . I actually had to wait 7 months for a referral where the target time was 12 weeks (because of availability of consultants and clinics).

I would definitely suggest contacting PALS at your local hospital to see what they say about this. They will be able to check what the target times are for your NHS, and whether your appointment is outside these times. They can then put pressure on to give you an earlier time.

Rather than calling the clinic for a cancellation, you could try a different approach - call them and ask if they can take down your phone number, because you can be available at very short notice if someone cancels (thats if you can, of course). Give them a contact phone number that will get you easily, like a mobile you have with you all the time. That way it isn't so much seen as "queue jumping", but as helping them out and making sure they don't get wasted consultant time if people do cancel the day before.

In answer to your original question - diagnosis in July and appointment in October actually seems quite good to me - not ideal, and not what NICE recommends, but for the NHS fairly good going!

[Hidden]

Earthwitch's suggestion about 'helping them out' sounds good to me. I tried phoning the Dermatology dept. to ask them to consider me if cancellation came up & it was all 'NO, NO, NO!' but I blathered on about how I needed the Dermatologist's view before I saw the Rheumy rather than after & 10 mins later got a call from them offering me a cancelled appt. the next day!

[zannie]

At our hospital, the normal return appointment is usually 3 to 4 months. With the NHS trying to get us all off their books, we should be grateful to have a return date at all. However, don't give up. Wish you luck. XX

[Hidden in reply to zannie]

What makes you think the NHS are trying to get us all off their books Zannie? I'm not sceptical, just interested in what you mean.

[zannie in reply to Hidden]

With the 'reorganisation' of key hospitals in our area, ( N W London ) proposals for closing down A and E departments and other acute services, I feel that the distances which seriously ill patients would have to cover to get any help ( many dependent on bus travel ) will result in deaths before any treatment is administered.