consultant unreasonable, hospital or me?

[thesootherfairy]

Long back story...
After years of pain, finally referred to rheumatology last year. Was diagnosed with an degenerative inflammatory arthritis condition.
Second appointment, same consultant in Feb this year.

Appointment was absolutely awful. he was rude, abrupt, talked over me the whole time. Insisted I take Biologics injections. I had made it clear I didn't want this as I object to the way this medication is made (religious views which were ignored) and side effects are absolutely brutal.
The appointment was a Saturday morning and there was only him, me and a nurse at the other end of a very long corridor.
Halfway through, he locked the door and then became almost abusive because I refused to take dangerous life changing drugs which could potentially kill me or at best make me really sick and rarely work for people with my type of arthritis.
He carried on intimidating me for a good half hour before unlocking the door and letting me go.
He talked over me, part way through stood up from his chair and stood over me whilst berating me. I ended up being frightened because I couldn't get out of the room, he was standing over me pratically yelling at me - I just wanted to leave.
He told me I would only be allowed physiotherapy (the cornerstone of treatment for my condition) if I took part in one of his Biologics clinical trials (am of child bearing age so no thanks to that!)
I made a complaint to the hospital. I received a 3 page apology.
A month after the apology, he wrote to me directly! Completely unrepentant about what happened.
I wrote to the hospital again but received no reply due to COVID lock down etc.
I had a letter in a while ago for a telephone appointment with rheumatology dept. I called the appointments line to check it wouldn't be this man again. I was assured that under no circumstances would he be contacting me again. And that they have 15 other rheumatology consultants and registrars who would take care of me instead.
The phone call was today.
Yes, you guessed it, it was him, again!
He was well aware of my complaints and my wishes not to have any further interaction with him. He said, he "couldn't see what my problem was". I asked to end the call and I had to ask 3 times before he listened (I know, I should just have hung up!). He was very rude and said he would "speak to the powers that be" about me.
I am so upset. Not only was it him again being rude to me.
I also waited 9 months for this appointment and for physio referral. And now I could wait another 9 to 12 months before anything happens, having already waiting 18 months for treatment so far.
Anyway, I'm very upset. So am I being unreasonable? Should I just suck up the rudeness, being ignored and talked over because the NHS is under pressure (covid, money etc)??

Go back to PALS. Can you see if you can be referred to a different hospital altogether?

I'm really sorry. Contact PALS.

This sounds terrible! You could contact the General Medical Council for advice/to complain.

I've never seen such behaviour in 36 years of working in the health service.

Contact your MP.
My MP was really helpful when I had a problem with my local hospital.

Years ago I met a very bizarre person in healthcare with forceful views. Not as extreme but I did complain to PALS politely. The response was then to phone me and rant about how dare I complain. @madcatladyforever it does very rarely get my weird in health care, but it does happen

Back to PALs. Is there another hospital? I agree with above that you should change.

If you have a moral objection to the use of hamster ovary cells in the production of Secukinumab, you'd probably better get used to the pain, then, as presumably you don't want any other medication either as it's also been tested on animals?

Physio doesn't address the inflammation that could cause your death from heart disease at approximately 15-20 years earlier than somebody without an autoimmune disease. Or the increased risk of blood cancers. Or it affecting your lungs, liver, eyes or other organs. Or your mental health, as uncontrolled inflammation also independently affects mood/emotions way beyond a simple response to chronic pain or any mental health diagnosis.

If you won't engage with treatment recommendations, there is really no point in you seeing any consultant as there is nothing they can do for you and the time that would have been spent trying to get you to do something about the inflammation that will not only cause you pain but will shorten your lifespan dramatically can be used for somebody who needs their expertise and prescribing/funding power.

Physiotherapists are available privately. Hydrotherapy is particularly good - if it's available during Covid, as it puts the therapist at considerable risk of covid infection. Doesn't stop inflammation though. Only medication can do that.

(Costenyx is brilliant for PsA, by the way. Humira was good, especially compared to MTX, hydrochloroquine and the other DMARDs, but the new prescription is completely lifechanging).

No, you should not simply put up with this behaviour from this person. That behaviour is unacceptable on all sorts of levels. Disgraceful, he cannot threaten to withhold one type of treatment unless you consent to being in a clinical trial - that wouldn’t be true consent from you to start with.

Contact the PALS team and ask them to escalate it to the clinical director for this chaps speciality.
If you didn’t in your first complaint, complain again directly to the office of the chief exec of the Trust this time.

This sounds awful, please complain, this is a legitimate complaint even with covid (coming from a HCP who eye rolls at most of the suggestions to complain on MN)

MitziK are you the OP's consultant?! There really was no need to be so rude, even if you don't agree with the OP's objection at certain treatments! This isn't about that. It's about a patient making a valid complaint about being intimidated by an aggressive consultant, the complaint being ignored and it being allowed to repeatedly happen again!

Complain complain complain to PALS op, ask to be referred to another hospital, email the trust Chief Exec & their deputy, email the office manager of Rheumatology about booking you yet again with this man. Take this as far as you can.

Go back to PALS and consider a complaint to thevGMC

And thinking about it I would also now involve the police, he imprisoned you

Also stick it on careopinion so it’s public

(You can change a few details and make it anonymous!!)

What was the biologic med you found so objectionable?

I'm on one for ulcerative colitis and it's been absolutely life changing with no side effects.

Sounds awful. Go back to PALS.

(NHS Consultant who manages complaints for dept).

As a minimum they should be able to sort a consultation with a different consultant.

I'm sorry you were treated so poorly @thesootherfairy

But

I refused to take dangerous life changing drugs which could potentially kill me or at best make me really sick and rarely work for people with my type of arthritis

Where are you getting this information?

And what are your religious objections?

Mitzik you sound very clued up about these.
I found your post very interesting.
I also agree there's going to be very little left to help without the meds they recommend.

I have an auto immune disease. Left undiagnosed for around 12years and now I'm under 30 with a type of arthritis and other major health issues.

How bad is methotrexate Mitzik?? I start that soon if I'm well enough

@Bummsbet

MitziK are you the OP's consultant?! There really was no need to be so rude, even if you don't agree with the OP's objection at certain treatments! This isn't about that. It's about a patient making a valid complaint about being intimidated by an aggressive consultant, the complaint being ignored and it being allowed to repeatedly happen again!

Complain complain complain to PALS op, ask to be referred to another hospital, email the trust Chief Exec & their deputy, email the office manager of Rheumatology about booking you yet again with this man. Take this as far as you can.

Of course I'm not.

But if somebody won't accept the treatment recommended to them, there is no point in being upset that they're not getting any treatment.

It takes a very, very long time on NHS protocols to be offered Biologics. To be offered the opportunity earlier on to stop disease progression before somebody suffers permanent disability and does not have to shelve any plans for children indefinitely if not permanently, to the extent that they might not drop dead at 54 like my father did from the consequences of untreated inflammation, well, it's an opportunity many people who have endured 40-odd years of pain (and idly wondering if they're on their last few years of life as they're approaching their father's age) could feel is an opportunity they wish they'd been given the chance of.

A new referral somewhere else will, particularly considering Covid, probably take )thinks back to previous years when it was necessary) about 12 months. And they'll want to start from scratch - no physiotherapy referrals for at least the first couple of appointments, then there's the physio waiting list. Then there's the fact that physio is often a phone call telling you to do the Yoga With Adrienne videos on YouTube and you'll get another call in about six weeks to tell you you're being discharged.

Biologics are fucking brilliant. Humira was amazing when backed up with regular steroid injections, Cosentyx even better because it targets different pathways to Humira. A quick Google will suggest that biologics don't work, but for my version of autoimmune disease, the latter is excellent, as evidenced by the five year continuation rates of it - it's still being taken five years later because it works.

As with all things, they have risks. But dropping dead in a couple of years isn't on my list of things to do if I can avoid it, which is what is likely to happen if I had refused the best the rheumatologists could offer.

Interesting post, @MitziK

@LostMyBaubles

Mitzik you sound very clued up about these. I found your post very interesting. I also agree there's going to be very little left to help without the meds they recommend.

I have an auto immune disease. Left undiagnosed for around 12years and now I'm under 30 with a type of arthritis and other major health issues.

How bad is methotrexate Mitzik?? I start that soon if I'm well enough

MTX? I couldn't tolerate the pills (I'm a serial puker up of oral meds), so asked if I could go onto the injections, which were much easier, albeit I still felt nauseous on them. The injections were easy as anything. And it's not that and nothing else - sometimes they add in other DMARDs, or injectable steroids could be given to deal with flares/to get some instant pain relief whilst the MTX starts to do its thing. It didn't work brilliantly for me, even at the highest doses, but that's common with Psoriatic Arthritis.

It was a necessary step to go through to get onto the biologics that have made such a difference, though.

I was on methotrexate and it really buggered me up!

The way you've been treated is horrendous and I would absolutely contact PALS, your MP and anyone else you can think of because you should not have been put through that.

I have to agree with the PP about starting treatment asap for the inflammation though. This does not excuse what the consultant did to you at all and I understand you have your reservations about certain meds but you must know that inflammatory arthritis will not go away on its own and the longer you wait to get on medication the more damage is happening. Physio is absolutely a great tool in your treatment plan but won't be much use on its own.

Good luck and I hope you manage to get some treatment soon.

I had to do the same to get on biologics for my UC. You have to fail on the less expensive standard medications before getting the wildly expensive biologics, but that only took a few months after my doctor got the process started.

I refused to take dangerous life changing drugs which could potentially kill me or at best make me really sick and rarely work for people with my type of arthritis

I think OP has been spending too much time consulting Dr. Google. The biologics have to go through the same approval process as any other prescription medication and lots have been in use for years now.

I’m pretty sure you’re not going to be given medication that will kill you. If he’s the consultant then his knowledge and experience should be considerably better than yours. Obviously he shouldn’t be rude but I wonder what his perspective would be.