Shocked 😱: I have a friend who has been in pain for... - NRAS

NRAS
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Shocked 😱

3LittleBirds2
3LittleBirds2

I have a friend who has been in pain for some time now and blood tests have show that something inflammatory is going on..she has a wait of 21 weeks to get a Rheumatology appointment blow the 12 week target...if that’s even a thing now?!

However, I’ve just seen on Twitter that the average wait in Belfast is 4 years!!!!!

1) NRAS are shocked to find the average wait time for rheumatology appointment in Belfast is 4 years.

NRAS campaigns for people living with RA and JIA on important issues such as wait times and improving the lives of people living with these diseases.

I’m not going to knock the NHS as they do an amazing job under enormous pressure but surely thinga have to change, I guess Rheumatology will always come bottom of the list? I’m just reading a book at the moment called THIS IS GOING TO HURT by ADAM KAY, he used to be a junior doctor and it’s a collection of his diary entries during his 6 years of medical training..it’s both hilarious, very sad and brutally honest at the same time. It’s not a plug for the book but a real insight into the pressure medical staff especially junior doctors face every day.

We truly have to learn to fight our corner with an auto immune condition..and you definitely become more strong willed...sometimes I feel like I’m telling my Consultant what to do and what I need...just wish I had his salary!!

Best wishes to everyone 😊

23 Replies
oldestnewest

You've hit the nail on the head there and it's certainly toughened me up more or maybe biting people's heads off sometimes without knowing it helps as they seem to keep their distance haha

Hidden
Hidden

I’ve read that, it’s brilliant! Sorry to hear about your poor friend, that’s awful but according to versus arthritis in their email, they have successfully campaigned for the 12 week limit 😉. Sound like postcode lottery x

3LittleBirds2
3LittleBirds2
in reply to Hidden

Absolutely...she has an appointment in January now but that’s only because she rings a couple of times a week for a cancellation otherwise she’d still be waiting since July/August.

Hidden
Hidden
in reply to 3LittleBirds2

I got emergency referral within 2 weeks when it all kicked off majorly last year; makes me feel guilty now. Didn’t realise how lucky I was x

Unless the nhs can magic up a few hundred rheumatologists overnight, which of course they can't .....things will not change in the near future. We can only hope that new drugs come on line, so that when diagnosed they work faster & doctors don't need to see those already diagnosed so often, thus leaving Appoinments free for new patients to be seen,

But that is sadly in the future.

Although NHS Consultants earn a good salary.....the mega bucks come from their Private Practices. If you are thinking of a job change .become a lawyer - that is where the eye watering money is !!!

Haha very true! Bit late in the day for me I’m afraid in another life maybe!

It really is disgraceful to expect people who are ill to wait 21 weeks to see a rheumatologist when we know much damage can be done to joints in the first few months of RD.

I had many delays at the beginning, delayed referral by GP, then an 11 week wait to see the rheumatologist, then over 12 weeks for MRI /scans etc

When I mentioned the delays to my GP he was completely unsympathetic and offered antidepressants. It seems to me many of the medical profession have had all the empathy they ever had beaten out of them.

I have read the review of Adam Kays book, you have spurred me into buy it now.

Shalf
Shalf
in reply to Mmrr

Very similar scenario

3LittleBirds2
3LittleBirds2
in reply to Mmrr

I can recommend it!! Like you I had many delays at the start partly down to me not tolerating the medications but also down to the long wait to be seen, like I said I’m very politely forceful now and nearly 6 years in a bit more knowledgable about the condition. Having said that I’ve ended up with severe joint damage in my wrists and hand where they were treating me for a very mild case of RA...RA may start off mild but if left untreated it gets very angry!!! I’ve noticed a real decline in appointments etc at my hospital but I’m not sure if that’s down to cuts or the sheer number of people developing this condition? Again like you...I tend to have various pills thrown at me that I know i do not particularly need or want but merely to shut me up for a bit!! I hope you’re doing well now and receiving the correct treatment 😊

Hidden
Hidden
in reply to 3LittleBirds2

Is there an increase in people developing it then? I was talking to friend who has it too & he said he thought far more have it than actually diagnosed quickly, worrying. x

3LittleBirds2
3LittleBirds2
in reply to Hidden

I really don’t know to be honest like I said it could be down to NHS cuts and my Consultant seems to only work a 3 day week he’s never in but not sure why!!. I know when I first started coming to this site just over 5 years ago there were just over 3000 members there’s now over 20.000 but that doesn’t mean anything to be honest it might just meant there’s more awareness about the site and it was over 5 years ago. When I was first diagnosed I knew absolutely zilch apart from a few leaflets shoved at me on my first appointment... and it was only by googling RA I found the site which has been absolutely brilliant. 😊. I’ve learnt more here than anywhere.

Hidden
Hidden
in reply to 3LittleBirds2

Oh dear, that sounds familiar, the leaflet shove. I’m totally self educated too, thank goodness for nras & this site. Almost felt like they were embarrassed to discuss it, didn’t even tell me it was auto immune 🙁 x probably too busy

3LittleBirds2
3LittleBirds2
in reply to Hidden

Haha no..I wasn’t told that either!!! My Rheumatologist is a Professor and a man of VERY little words he barely speaks to me. I saw his registrar for a few appointments and she was blinking brilliant!!! I agree about the self education and this site 😊

HiddenThis reply has been deleted
3LittleBirds2
3LittleBirds2
in reply to Hidden

I couldn’t agree more!!!!! She was young, keen, informative and the one who did a ANTI CCP test and x rays of my feet..no one had even mentioned it before?! I wonder if we go to the same hospital?! X

HiddenThis reply has been deleted
3LittleBirds2
3LittleBirds2
in reply to Hidden

I’m in SW ENgland so we’re not at the same hospital but maybe most Rheumatology departments are the same?! No, my department is fairly good too but I have noticed a real decline..the helpline is virtually impossible to get hold off or get a reply too. 😢

purl
purl
in reply to 3LittleBirds2

I'm SWW England as well, which hospital are you with?

I thought if suspected RA it should be an appointment in 2 weeks.

In an ideal world 😊. My friend has been waiting 21 weeks for her first Rheumatology appointment. Her granddaughter has JIA.

I’d say I’m shocked but I’m not. I see it too often in my line off work. The cuts to health and social care funding have driven away decent professionals. The stress and pressure is not worth it for many people.

On a personal note, I was referred to a specialist neuromuscular clinic from general neurology. There is no a wait but there is no wait because they are absolutely no appointments. I’m waiting for a phone call back to see what happens next.

That’s sounds about right..or are just worn down by it all. I really hope you get an appointment soon xx

I think I have read that rheumatologists are the lowest incoming specialists out there. Everyone interns with chi chi cardiologists and get their attention. Rheums are retiring faster everywhere than are coming in. It's a shame considering the pot of patients probably outweigh cardiologists but that is a major reason why it's so hard to get in everywhere.

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