Changing rheumatology consultants... need some advice

[MamaBanana12]

Hoping for some advice / experience. I want to change consultant rheumatologist - mine is, well useless tbh!

I was diagnosed with RA in 2021, this was done via private medical care due to not being able to see a Rheumatology for far too many months and I couldn't move/walk or function and I had a newborn baby.

I then started the long road to finding the right medications.

Anyway long story short. Been very unwell constantly since - consultant very not bothered, see him 6 months if I'm lucky, even though I'm unstable.

Had another course of steroids in Feb/March time due to flare and losing mobility. No offer of appointment. Just chat with nurses on the phone.

Since October last year I have had huge issues with my knees, had MRI which showed huge swelling and a tear. Consultant again not really interested and I then took myself off to private AGAIN to see if I need surgery, surgeon says need to fix swelling before any surgery considered (obviously!)

So roll on now, I rang specialist nurse helpline in agony wirh another flare leaving me with no ability to walk, and my knee was around 6 x the size of normal, awfully swollen.

GP told me to go to Rheumo for help, Rheumo won't see me as bloods looked 'ok' (I'd been on steroids) and they tell me they are going to 'wait and see' what happens with my knee....

So I then make another private appointment with a Rheumo consultant, the NHS nurse was so rude to me on the phone about it but my NHS consultant follow up is in November and they don't want to see me.

So I see private consultant who drains a disgusting amount of fluid from my knee and injectors with steroid into the joint - recommends my DMARDS need changing as clearly not working.

Anyway, I have no no trust now in my consultant as he just won't see me and even when he does he doesn't listen or do anything, how do I change/ can I even change? I know how stretched they are but I am just so so so broken.

I'm young and have small kids and my life is just horrendous

Anyway if anyone reads that I apologise and TIA

I'm sorry to hear how much you are struggling. I don't think the issue here is your consultant and changing won't necessarily make any difference to your care. It could even slow things down.

My dp is under rheumatology and is supposed to see consultant every 6 months but often it's more like 9-12 months and sometimes then the consultant isn't available and he sees a nurse practitioner instead. It's the chronic underfunding of the NHS by our government causing this. They are stretched far too thinly and they've never been able to catch-up post COVID.

Hi! Did you have any luck with changing your consultant? I’m also in a position where I’m not very happy with my rheumatologist but not sure how to go about it and who would be most helpful.

if you want to stay at the same hospital, just ring PALs or email them and explain that you want to change consultant for second opinion, they’ll get in touch with the department and arrange for this.

though I must warn, as previously the manager for rheumatology, there is a huge chronic vacancy rate for rheumatology consultants, pretty much every hospital has huge gaps and many places are reliant on one consultant and sometimes locums. Many departments are relying heavily on nurse practitioners who are excellent. I share this not to depress you, but just to give you the context. It’s terrible right now.

you could use your PALS query to highlight your concerns and experience but imagine many patients are in the same boat sadly. But it might speed up a review for you.

so sorry you’re in this position, I really hope you progress well soon.

Hi, no I didn't. Still having issues. But did go in very armed with info from the private rheumatologist and he has doubled one medication & changed another. Back to see him next week.
He's just so rude.

Last appointment walked out in tears as he told me so bluntly that I'm unreasonable to expect to have the level of hand function I'm after and I have to just get over it and accept it is what it is... because I've lost full use of my hands. He is shit tbh but there is such a shortage of them

Thanks , yeah that's exactly the issue he's the only one covering 3 hospitals! I don't envy the position and I know they are short but he's just so damn rude and difficult. Not an ounce of empathy or compassion and it really bothers me.
Plus he just does nothing, I've gone that long now with treatment not working my joints have just degenerated that much it's looking like surgery is the options to restore me some quality of life. I'm only 30. It's just a shame

@MamaBanana12 I’m horrified for you. I was diagnosed post partum at 31 so similar to you.

Can you ask your GP to refer you to a different hospital? Any private health insurance through work perhaps?

My wonderful rheumatologist retired from NHS due to the pensions stuff but works privately and luckily his old NHS team will do whatever he advises me in a private appt.

I don’t know if it helps but I was in pain for years and unable to look after DC or work but biologics changed my life. Have hope ❤️

@MamaBanana12 I just wanted to say I am so sorry you are going through this and I agree your consultant sounds horrendous. Surely you should be on biologic injections? My partner has another form of arthritis and biologics have changed his life.

Hi, I am on biological injections alongside methotrexate.

It's just not working, so need to change but he's just so reluctant and says I should accept how I am and doubts a different biological will make a difference.

My opinion is that i should try and exhaust different treatments to regain as much function as I can.

He's an arse !

I've used my private medical cover to control the flares and seen a private rheumatologist, my cover doesn't cover long term chronic conditions. Only the flare up.

Yeah I can ask the GP to re refer but I would be looking at a 6-9 month wait to go see someone else. Which I'm not well enough to wait that long. It's a vicious cycle.

I just have to really go in strong with him and advocate for myself. The specialist nurses are great and I asked my regular one to come in with me which did help, but I'm just tired of battling for help.

They left me unable to walk and I had to pay private to get both of my knees drained I couldn't bend at all or move it was horrendous. Yet he thinks my medication mix is working!

I'm back next week to change into a different biological so god knows what that will go like

@MamaBanana12 I did change consultant! Are you being treated in Hertfordshire? If so, the consultant is an arse.

I now attend UCLH, where the consultant is brilliant as is the clinical nurse.

My medication has been hit and miss, so we move on and try something else.

Speak to your GP about a referral to a different hospital trust.

RA is miserable and we do deserve some relief/improvement.

No not that area! But seems there is an epidemic of arsed!

Did you have to go back on a waiting list? That is what worries me?

I'm so up and down I just don't think I can afford the wait for care

@MamaBanana12 I was referred as urgent. I couldn't stand up straight, and had a 2 year old and 5 year old. It helped that I had already had all blood tests done previously. I think I was seen within 8 weeks, diagnosed properly at that 1st appointment and put on medication immediately.

I'm seen every 3 months, and have bloods taken for monitoring and have an MRI yearly to see how the RA is progressing. If my meds aren't working they're changed, although it can take a little time. A lot of it is trial and error.

In your position, which I was, I'd go for a referral elsewhere. The difference in care is like night and day.

@MamaBanana12 are you in Norfolk by any chance?

I'm not no, but sad to hear so many areas have this problem!

Thank you, I'll speak with my GP and get an understanding of timescales. I have quite a lot of appts at the moment as even though I've been diagnosed 3.5 years I'm probably in worse condition now than ever! I'm just exhausted by it

@MamaBanana12 you have nothing to lose by asking for the referral. Sending healing vibes 😌

Definitely need to get the consultant changed.

I also had a bit of a run around with an arsey consultant who seemed reluctant to change anything even though the Sulfa I was on wasn't working anymore. I was told that if I refused to take Mtx (32 and TTC) then it wasn't the NHS's responsibility to treat me as they 'weren't there to fund my fertility decisions.'

So I then paid BUPA £250 to see a private consultant who I knew had an NHS clinic under a different trust. A 5 minute appointment later and review of my activity scores and he put me on his NHS List and I started biologics from there.

Have none of the people you've seen privately been able to get you transferred across to them on the NHS?

In addition I would suggest seeing a good physio. They can offer good treatment and help getting you mobile. Possibly looking at other treatments for RA, but you may have to go private.

Slight update after more crap treatment I've done it. Rang gp and explained and they have moved me across to the trust where I have seen the private doctor I paid for. So I'm so happy to be going to him as he is one of the best In the north!

Might be a little wait but to be honest I'm left in pain and swollen anyway even with a consultant so no real change.

@MamaBanana12 that's great news that you have been referred on. Fingers crossed it isn't too long to wait 🤞🏻keep us updated

I changed rheumatologist 4 years ago. The one I had was pleasant but patronising and didn't like being questioned.
There are only 3 at the trust so I asked my GP to do a referral letter for a second opinion to a different rheumatologist. I saw him privately and he agreed to put me on his list. I never disclosed why I was unhappy with the old one.
It was a victory of sorts but my new guy is 12 months behind with reviews. I should have seen him in August and it will likely be next August.
I had a bad experience with the specialist nurse who was very unsympathetic and unhelpful when I was having chemotherapy for breast cancer and had a big flare.

Sorry to hear that. It's so hard to find decent care sometimes.

@MamaBanana12

I am not sure where up North you are but would you be prepared to PM me the name of your Private Consultant and where they practice?

I am in despair about the Rheumatologist I am seeing and looking for someone who might be able to help with my condition.

I'm in Teesside area. I can't PM on the app.

As a further update had ultrasounds on hands and my tendons are a mess and inflamed and I have no wrist mobility.

Chased existing trust and consultant had actually said he will changed my biologicals.

So we shall see ! Also getting some steroid injections to see me over