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)??

Im on injectable mtx and have been for 5 years - no issues with this after first 3 months (a bit of nausea and headaches). I am also on Humira - fantastic drug - have gone from crying with pain and unable to walk (at age 40) to really zero pain and fully fit - I have PSA.
My sister has PSA and refuses to take the drugs - her hands are deformed and she’s had serious spine surgery.
You may hate this consultant but he is correct - took me 2 years of hell to even get to the stage I was eligible for Humira - you are really very lucky to have access to one of these drugs BUT it is your choice - be aware though when the damage is done, it can’t be reversed.
Good luck

Are people reading this and actually believing it?

The consultant locked her in a room with him and refused to let her leave?

That would be a police matter. Not left to PALS.

I agree that you should complain but I also agree with those saying that biologics are life changing and considered very low risk these days given how successfully they have been used since they were brought to the market.

Whats the hang over like? Keep being told its quite bad etc.
I can't compare to normal hang over as I don't drink lol

Op you should never have been treated like that and I would definitely pursue with your complaint. No one should be treat like that!
The other part about drugs I would make sure you’ve thought long and hard about it as I tried methotrexate for years and side effects (for me) were awful. I also had young kids which was awful trying to be a good mam whilst feeling ill. I’m now on Humira and have been for about 7 years to treat psoriatic arthritis. It has changed my life. I totally understand it’s your opinion and life but just consider what quality of life you want. All the best though as it’s hard before you get it under control.
Oh and I find the older consultants can be quite harsh when you disagree with them! I ditched mine and got a new younger consultant who has been amazing!

I don't suffer from Psa. Its AX Spa. for which most biologics are not effective.
I was offered Biologics after only trying nurofen and naproxen. Nothign else. It is my understanding that there are 16 other anti inflammatory drugs I could try first.
My first hand encounters with biologics are two neighbours both Psa. One was almost killed by the biologic he tried and it cost him his career. The other developed Non-hodgekins lymphoma after 3 years on a biologic. So no thanks to that.
My objection isn't animal testing.
My objection is that the biologics are human and animal dna chimeras. I think they're an affront to god. I realise others feel differently and this is their choice.
Also where do you all think the human DNA component comes from when all of these are made in china? I suspect from political prisoners who are not willing participant. So from human rights perspective these are objectionable.

That aside. Can I write to the CCG and complain or is it NHS england? About the rude consultant that is?

I would be interested to hear his side tbh.

Regardless of what anyone thinks about the OP's reluctance to take any of this medication that is not the point of her post!!! That is not what she is complaining about.

The consultant locked you in a room for half an hour? And shouted at you and the nurse did nothing?

I agree this is a police matter. Why are you even questioning if this is wrong? Did the consultant not have any other patients to see? I dont understand why it was just you on a saturday morning

I agree wkth @MitziK that you have declined treatment. The reason you have waited is because you have declined treatment

Please complain. Because regardless of whether the consultant was right or not re the drug, his behaviour is so wrong and the follow up phonecall etc was also wrong. I'd have been frightened to death by his behaviour.

Regarding the inflammation, if you can't manage the levels of pain you're in now, I really do think you should consider the treatment. If it disagrees with you, you have the option to stop.

I have several chronic pain conditions and everything is agonising every day but I experience severe allergic reactions to the anti inflammatory medicines. I'd kill to be able to take them.

I can't believe the consultant though. I've met some like him before, in mental health. Unpleasant.

I was the last appointment on a saturday morning and there was no one else there by the time I was taken in.

The nurse couldn't have heard anything as she was in her own room at the other end of the department through a double set of swing doors in the long corridor/hallway

He only started getting shouty and locked the door when I wouldn't partici[ate in his reseach study and take biologics.
I told DH when I got home. He wanted to take it further rather than just write a letter of complaint.

So can I complain to NHS England?

I do think whatever happened it is completely unreasonable to rebook a patient with a doctor where there had a been a breakdown in the relationship. It is non productive for both parties.

This is so attention seeking

I believe you OP.
And I think you should take it further.

Some people act like Doctors are infallible demigods... Having any experience of inpatient care let's you know that isn't true!

I hope you find a doctor compassionate to your religious needs.

I was assaulted by my daughter’s consultant (sexual touching, stroking me, putting his leg up against mine, I was trapped between his legs, he put his arm on my thigh. I was absolutely terrified and he was in between me and the door when he eventually moved away.
That was broad daylight in a Children’s ward. When my husband arrived at the appointment late he said we weren’t in the room..
I had to go back for another appointment and he was ignoring me, rude (to my face in front of my DH), as in personal statements. It was unbelievable
I reported it to the clinical lead of the department who tried to talk me out of it (ie I must have been deluded/ don’t take it further). I refused and made a formal complaint. They “investigated”.
The hospital chose to say there wasn’t anything sexual in it and that was that.
I write back to the decision maker. Same response.
I went to the GMC. It did a full investigation. Did nothing.
Went to the police. They investigated. Decided to do nothing because he is married to a man and denied it.
The entire thing destroyed me for a while.

So I DO believe you OP, even when no-one else will.
The best thing would be the police and/or GMC.

Out of curiosity what did he say in his letter?

@thesootherfairy

I don't suffer from Psa. Its AX Spa. for which most biologics are not effective. I was offered Biologics after only trying nurofen and naproxen. Nothign else. It is my understanding that there are 16 other anti inflammatory drugs I could try first. My first hand encounters with biologics are two neighbours both Psa. One was almost killed by the biologic he tried and it cost him his career. The other developed Non-hodgekins lymphoma after 3 years on a biologic. So no thanks to that. My objection isn't animal testing. My objection is that the biologics are human and animal dna chimeras. I think they're an affront to god. I realise others feel differently and this is their choice. Also where do you all think the human DNA component comes from when all of these are made in china? I suspect from political prisoners who are not willing participant. So from human rights perspective these are objectionable.

That aside. Can I write to the CCG and complain or is it NHS england? About the rude consultant that is?

Of course you can complain. Try the Chief Exec's office, too.

Shame about your objections, though, as Cosentyx is the only thing that has enabled my SI joints to move freely as intended and this week, for the first time in around 30 years, my thoracic spine has flexed properly instead of being locked in place. My mother ended up with spinal surgery due to what wasn't given a name other than RA, where her 'lower vertebrae had overgrown'.

The other medications have also got similarly dubious origins if you're looking into that side of things. And potentially fatal side effects/consequences.

Anyhow, by not taking anything to actually address the inflammation, you're also at a higher risk of blood cancers. If your heart doesn't get you first, that is. I made the decision that as I have a risk of premature death either way, I'd rather take the option that gave me a chance of actually living a life in the meantime. As even early studies in Medicine have been seen both to prolong life with the gifts given by God and as an affront to God's plan, I don't share your views, particularly as the cells aren't harvested from political prisoners on an ongoing basis as you seem to believe. Perhaps you would refuse Insulin on the same basis, but the result of that is that you would die very quickly. Refusing effective medication that could stop that inflammation just means you're likely to die after a few more years without having any quality of life in the meantime.

Ok, that’s all very concerning, an nhs doctor locking you in the room ans abusing you. The drugs coming from the dna of political prisoners.

You’ve got to do what you feel is right op. Good luck.

He locked the door??

That is well out of order
I have never heard anything like it

Can you call PALS? I think that would be a better starting point than writing a letter to anyone. You don’t want to delay getting the treatment you want/need.