Hi, I’m new, your views on accessing help please. - NRAS

NRAS
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Hi, I’m new, your views on accessing help please.

Skypony
Skypony

Hi everyone. I’m a female in my 60’s and I have several autoimmune diseases but I’ve only ever had one serious acute attack of autoimmune arthritis, 18 years ago.

On that occasion I was negative for rheumatoid factors but had several other raised inflammatory markers/antibodies. That attack responded well to heavy doses of steroids etc that were eventually prescribed, but I was left with permanent damage to my fingers due to a slow start to treatment. Now after this long period with only a few episodes of mild pain/swelling which settled within a few weeks, I have a couple of new swollen finger joints that may be a bit more significant. I’m aware that I’d wait 2 weeks to get a GP appointment and might wait months more for an initial assessment at a hospital (?)

My question, please, is whether there’s advice or guidelines on the time frame for getting help for a new onset or does this just depend on individual GPs? I know you can’t comment on my medical condition, but I’d be very grateful for your knowledge and experience on whether there is now a focus on early intervention to avoid permanent damage. Of course, this attack may settle on its own, but I want to understand things better in case it doesn’t.

Thank you for reading, and I really appreciate any comments.

16 Replies
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There are guidelines, but they are just that - guidelines. So not actual requirements that should be adhered to, and most hospitals can’t anyway as they are overwhelmed and have too few rheumatologists. I seem to recall it’s 12 weeks from referral.

Do you have a diagnosis of inflammatory arthritis on your file, and are you “on the books” of a local hospital rheumatology department? As it could actually carry more weight to be an existing patient in an acute flare, rather than a new patient.

Otherwise some hospitals have early arthritis clinics that aim to see new patients within 6 weeks. But the hospitals will only accept patients that meet their early arthritis criteria, usually things like number of joints affected, length of time, raised inflammatory markers and soon on.

Anyway, I suggest the sooner you get to a GP the sooner you can be referred, and the sooner you can get to see a rheumatologist (or the less long you will have to wait). The first hurdle is getting a GP to refer you - some are under strict instructions from local hospitals not to refer every vague case. Then it’s up to hospital to slot you in,

Usually GPs know the local services and can advise which might have shortest waiting times.

Skypony
Skypony
in reply to helixhelix

Thank you so much for your very comprehensive reply helixhelix, I understand the situation better now.

It took almost 10 months from symptoms starting to diagnosis for me. But I was originally referred for carpal tunnel as family history but the symptoms started in both wrists at the same time.

Thank you bunnycaramel, that is a long time!

I got GP appt same day & rheumatology within 2 weeks. This was after couple of months of drop in appts, wrists, carpal tunnel? hip issues, X-ray etc but then my fingers swelled up painfully & pratice nurse was brilliant.

Hope this gives you a bit of hope. I thought it was classed as medical emergency on nras site somewhere? I don’t see why you have to wait 2 weeks for GP appt not same day; I’d just say what you’ve posted above, you’ve already got damaged fingers, new swelling, existing AI & worried it’s RA. Good luck x

Skypony
Skypony
in reply to Kerensa21

Thank you very much Kerensa21, that’s good advice. It does usually take about 2 weeks with my GP, but as you say it should depend on whether it seems urgent. x

Kerensa21
Kerensa21
in reply to Skypony

Maybe I was lucky but mine are pretty good; I hadn’t slept with pain & your swelling might have gone down again if you have to wait. Hope you get seen soon 🤞

Skypony
Skypony
in reply to Kerensa21

Thanks for your kindness.

It depends entirely where you are located...in some areas you can get an emergency GP appointment to bring your condition to the attention of your doctors.

At that short appointment if thought necessary you will be given a full appointment.....the timing once again will depend on local conditions.

If you feel you need an even more urgent appointment you can call 111....explain your situation and they might get you an earlier appointment, but not necessarily with your own GP practice.

Unfortunately there are no laid down time scales for Rheumatology appointments ....there are ‘suggested time scales’....but nothing like the 14 day pathway for cancer diagnosis.

Tbh I think your first move should be to téléphone your GP practice today & maybe ask to speak to the practice nurse....but even for that you may need to make an appointment...or NRAS May have some more helpful advice.

But you need to start today.......let’s hope you can get an appointment quite soon.

Skypony
Skypony
in reply to AgedCrone

Thank you AgedCrone, I’ve now started the ball rolling and may be able to speak to a GP tomorrow so we’ll see what happens. I’m grateful for all the support and information.

Hiya Skypony, welcome to us here at the HU NRAS site. It's unfortunately a regional problem. There are guidelines & pathways but no rules written in stone, these are they nice.org.uk/guidance/ng100/... cks.nice.org.uk/rheumatoid-... Some are referred quickly, others no so but the only way you'll find out is to book that GP appointment as soon as you can, no point dragging your heels if you get me, that first step is yours to take. The sooner you get the ball rolling the sooner the possibly of you entering the Rheumatology system.

As you're doubtless aware autoimmune diseases tend to tag along when you're diagnosed with one & you have a history of inflammation resulting in damage through not being appropriately medicated so I would have thought if your GP takes this into account he'll refer you promptly. We are always reminded of the treat to target, it's included in the first link I gave, so yes, there is as you ask focus on early intervention to avoid permanent damage.

Just a thought, if you're in a position to attend at short notice you could ask if you could be added to the cancellation list, if the hospital you'd attend operate one.

Stay around, there's lots we can help with through experience, or if you'd prefer you can call the NRAS helpline which is open Mon-Fri, 9.30am - 4.30pm and is free for UK landlines 0800 298 7650. They're experienced in all things RD.

Skypony
Skypony
in reply to nomoreheels

Thank you nomoreheels, I followed the link and yes that makes things clear. I’m learning from the kind responses that people’s journeys vary a lot, but that advocating for yourself is key. I have done this with my other conditions, but I understand this one less well due to lack of recent experience. Very reassuring to have people to ask!

All in all I waited 19months before I was diagnosed with RA first gp told me it was just arthritis then I went back 6 months no better sent me for blood tests then they came back clear so gp sent me for physio as said it was my posture I was 63 I knew it was more than that so went back 3 months sent to see rheumatoid consultant he assured me it was osteoarthritis more blood test and after all that time wasted was told yes it’s R A so now I am on methotrexate injection s and benepali and pain killers my fingers are bent swollen still have my ups and downs but I am lucky I have brilliant husband and family and understanding friends x

Oh I’m so sorry to hear about your poor hands and that you didn’t get appropriate treatment for a long time. Yes, having supportive people around you can make such a difference.

I have an index finger which is fixed in a straight line and ‘gives people the finger’ if I’m not careful what it’s doing!

As stated before, get the ball rolling by seeing your GP, but in the meantime start a diary of your symptoms and take photographs of your effected joints. This information will be helpful when you see a Rheumatologist.

Skypony
Skypony
in reply to Sockknitter

Thank you Sockknitter, I hadn’t thought of taking photos - makes sense.

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