Getting a Diagnosis in NI or Using Benenden

Moggy_Mama

Hi

I’ve just been referred by GP for RA (been having weird stuff going on with hands and have CCP? antibodies).

Having read around a bit (and been a bit horrified by what RA actually is!!) and that fact that prompt diagnosis and initiation of treatment best, I thought I’d have a look at wait times.

It’s 2-3 YEARS wait here in NI.

I’ve Benenden health care, so thinking about going down that route. However, I’m not quite sure whether that’s viable - there doesn’t seem to be any point in getting a confirmed diagnosis and then having to wait 2-3 years to get access to treatment (which Benenden doesn’t do - it’s diagnostic only).

I’d really appreciate pointers from anyone in NI, or who has started the ball rolling using Benenden. Feeling a bit overwhelmed and abandoned right now, and wondering whether to just stick my head in the sand for the long haul

KC1

https://community.versusarthritis.org/discussion/63178/getting-a-diagnosis-in-ni-or-using-benenden

Hi Moggy_mamma, sorry to hear your news. While I don’t have RA I do know people who have used beneden for diagnostic purposes. They have found it really helpful because you get to understand what your condition is/isn’t and can then see what the treatment pathway looks like. In one case the individual was referred to a heart specialist really quickly and they were treated speedily by the NHS.

we are all different in what we personally might find helpful. I know from my own perspective if I had a chance to get a speedy diagnosis I would take it and work out the rest with my GP etc after that. I wish you all the very best.

annabanana

first of all, welcome to the community @Moggy_Mama ! Lovely to have you with us 😊. Secondly, I'm sorry to hear about how you're struggling with getting an RA diagnoses. I can't offer any advice for your situation as although I also have RA, I was diagnosed through the NHS a few years ago - however, I have attached a link which may help you in some way.

I deeply hope things improve for you and you do not actually have to wait as long as is predicted, sending hope and love 🙏

https://www.versusarthritis.org/news/2023/june/how-can-i-prepare-for-a-doctor-s-appointment-if-i-have-arthritis/

https://www.versusarthritis.org/about-arthritis/while-youre-waiting/

Ajagpd

Hi @Moggy_Mama

I'm also in NI, I've had issues with my knees for about 8 years now. It was always between my GP and orthopedics (they thought pain and swelling was caused by a tear in my cartilage) and unfortunately i think they thought i was being a bit dramatic until they seen the flare up for themselves lol. But I started having symptoms in both knees so ortho sent me off to rheumatology after an MRI in my "good knee". I also have pain in my fingers toes and back that I've now come to realise are likely related 🙃 anywayyyyyy..

Orthopedics (musgrave) refered me in Nov/Dec time and I had an appointment in the royal by Feb. They now believe I have inflammatory arthritis but are still working out a diagnosis as my CRP is positive but everything else is negative.

Appointment in Feb to understand my symptoms and get new xrays and bloods and given some medication to help. Appointment in March for a steroid injection and advised my next appointment is to be September time.

Can't promise it won't take forever but hopefully it'll only be a few months at most. If you are worried you could use Beneden to regain some control over things as I know I spiralled when I started to google things as well!

Laura25

https://community.versusarthritis.org/discussion/63178/getting-a-diagnosis-in-ni-or-using-benenden

Hi,

I was diagnosed in 2022 here in NI. I was the same as you with the bloodwork showing up I potentially had it. I had to wait 6 weeks with Kingsbridge before I was seen and a year or two with the NHS but in this 6 weeks alone I became unable to walk and write etc. It was the toughest time of my life to date and I often wonder if I didn’t have 6 weeks to wait would I have needed wrist surgery and would I have lost a joint in my foot (it worked out better for the foot though weirdly).

My best advice is even if it is costly please get seen to privately to get the correct treatment before it progresses further and causes long-term damage. It is such a scary time in the pre-diagnosis stage as so much is unknown and unexplained.
I still struggle mentally and physically with it from time to time but now know what my triggers are and how to help myself in the long-term.

I have H3 health insurance which covered me at the beginning for initial tests but not now as I have been diagnosed which I think is rubbish. All health insurance is like this so I have a savings account now solely for health should I need to dip into it for faster treatment.

Take care, eat a balanced diet, exercise if your body allows you & always act on it when you have pain by seeing someone / getting scans .

The sooner you get seen to the better you will be in the future.

Hope this helps!

You’ve got this!
Laura x