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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

consultant unreasonable, hospital or me?

101 replies

thesootherfairy · 22/10/2020 18:31

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)??

OP posts:
Joditaylorfan · 23/10/2020 08:11

I believe you. Police and GMC matter.

Caeruleanblue · 23/10/2020 08:19

He only started getting shouty and locked the door when I wouldn't partici[ate in his reseach study and take biologics

I suspect this is the important bit. Assuming the OP's illness is rare, he could be struggling to complete his paper - hence his unreasonableness, ??desperation to get his name at the top of important research papers, ???missing out on funding from the pharma for his research due to lack of candidates.

Make sure you mention his research when you complain, OP.

ChaToilLeam · 23/10/2020 08:21

PALS, GMC, police.

While you might not be right about the treatment offered, you have the right to decline and should be offered another consultant. It is unacceptable that this man tried to bully you into joining his study. Perhaps a consultant who doesn’t have a vested interest in prescribing Biologics would be more amenable to discussing alternatives.

LaBellina · 23/10/2020 08:25

PALS, GMC and I would consider reporting to the police too.

This man sounds unhinged and dangerous to any patient, esspecially those who are not able to stand up for themselves.
Quite frankly, I think he shouldn't be working as a HCP at all if this is his 'bedside manner.' Creepy is a nice way even to describe his behavior.

underneaththeash · 23/10/2020 08:31

Well he shouldn't have locked the door, but I think you're nuts not listening to him regarding your treatment.

acrabstracts.org/abstract/comparing-symptoms-treatments-patterns-and-quality-of-life-of-non-radiographic-axial-spondyloarthritis-and-ankylosing-spondylitis-patients-findings-from-a-us-survey/
I'm also fairly sure that one of the biologics can be made synthetically.
It's also been disproven that biologics cause non-hodgkins, although they do increase the risk of certain types of skin cancer - but this risk is very small and without treatment, you could well end up with a very poor quality of life.

Porcupineinwaiting · 23/10/2020 09:00

Yes complain. And learn to put the phone down, you dont need permission to end a call.

Serin · 23/10/2020 09:24

Despite me working in the NHS and RA making my life (and job) more difficult than it needs to be, I'm still not considered bad enough to be offerred biologics and I sure as hell can't afford them privately.
Your consultant sounds very rude and lacking in bedside manners but I would absolutely swap with you for my lovely, charming rheumatologist who is making me battle on with methotrexate.
Sad

QuizzlyBear · 23/10/2020 09:36

He only started getting shouty and locked the door when I wouldn't partici[ate in his reseach study and take biologics

Was this about the same time you gave your reasons for not taking life saving medication? Conspiracy theories about harvested political prisoners and the science used being an 'affront to God'?

I'm not excusing his getting aggressive with you, but it seems telling that his attitude changed when you started on topics that (with the greatest of respect) may have come across as a little cuckoo bananas.

Lostinprague · 23/10/2020 10:04

Have been taking Methotrexate for quite a few years, originally as tablets then changed to injections because of stomach problems. It enables me to live an almost normal life without crippling pain. I also take painkillers for general achiness. Do get slight nausea for a day, some weeks more than others but would not give it up because it works for me.

cologne4711 · 23/10/2020 10:44

Well he shouldn't have locked the door, but I think you're nuts not listening to him regarding your treatment

I wouldn't listen to anyone who locked the door and tried to scare me into treatment!

thesootherfairy · 23/10/2020 12:55

I wouldn't be offered methotrexate. It's not NICE approved for ax spa so at no point would that or steriods be offered to me. No dmards such as sulfalazine (sp?) would be offered either.
The only things offered both according to my GP, NICE and even the rude consultant would be physio, anti inflammatories (and cox 2 inhibitors) and Biologics and the three on offer would be adalimumab, etanercept and certolizumab.
That's it nothing else.
I was pleased enough with trying anti inflammatories and physio.
As it would save the NHS £15k a year that Adalimumab costs surely that's a benefit to all.
I also think some of you are confusing Ax Spa with seron- positive conditions such as PSa and RA.
Ax Spa is seron-negative which means there are no raised inflammatory markers on my blood tests at all. So with Ax SPa there is no increased cardiovascular risks at all.
There are very big differences between PSa, RA and Ax Spa. They're only loosely related. Their disease progressions are completely different.

OP posts:
BoulangerieBabs · 23/10/2020 13:16

Hate to tell you this Op but just because your inflammatory markers don't show in your blood does not mean you don't have inflammation in your body, so yes you are still at risk with all the joyous crap that comes with uncontrolled inflammation.

NICE pathways for AS do indeed bypass traditional meds because it's been shown that they are ineffective hence going on to biologics much sooner. The only thing that's helped my spine and SI joint have been biologics, everything else was ineffective.

If those biologics don't work then there's Cosentyx, another type of biologic which works on a different protein which is seriously good on PsA and AS for most of us.

A pp is right when they said to prepare for a life of pain if you decide not to take the drugs offered, as the inflammation worsens and damage sets it, it's a miserable life of pain and feeling like you've got a permanent bout of the flu.

I've got nothing to offer on the consultant because I'd have already gone to my gp asking for a referral elsewhere stating what had happened.

MitziK · 23/10/2020 14:41

@thesootherfairy

I wouldn't be offered methotrexate. It's not NICE approved for ax spa so at no point would that or steriods be offered to me. No dmards such as sulfalazine (sp?) would be offered either. The only things offered both according to my GP, NICE and even the rude consultant would be physio, anti inflammatories (and cox 2 inhibitors) and Biologics and the three on offer would be adalimumab, etanercept and certolizumab. That's it nothing else. I was pleased enough with trying anti inflammatories and physio. As it would save the NHS £15k a year that Adalimumab costs surely that's a benefit to all. I also think some of you are confusing Ax Spa with seron- positive conditions such as PSa and RA. Ax Spa is seron-negative which means there are no raised inflammatory markers on my blood tests at all. So with Ax SPa there is no increased cardiovascular risks at all. There are very big differences between PSa, RA and Ax Spa. They're only loosely related. Their disease progressions are completely different.
Rheumatoid Arthritis and Psa can also be seronegative. Axial Spondyloarthropathy is also an inflammatory condition. If it wasn't, there would be absolutely no point in taking antiinflammatories for it.

Cox-2 inhibitors have a a cardiothrombotic risk, which is why some have been withdrawn from the market.

You may like to think that you are well informed, but it really doesn't appear to be the case.

Palavah · 23/10/2020 14:47

@MitziK

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).

Whatever you think of OP's objections to this specific drug, are you suggesting it was reasonable of the consultant to lock her in, behave in an intimidating manner, and make physiotherapy conditional on participation in trials?

Are you that consultant??

PhilCornwall1 · 23/10/2020 14:50

I also think some of you are confusing Ax Spa with seron- positive conditions such as PSa and RA.

RA can also be seronegative.

UncleFoster · 23/10/2020 16:25

But you tried NSAIDS op and they didnt work? Yes there are other nsaids but it seems more sensible to try a different class of drug all together. Im not sure what treatment you are really expecting them to be able to offer you, its unlikely you are going to find the magic nsaid when others dont work. And physio is not a magic eand either, it can help manage the condition but it wont offer what biologics can

It is still an inflammatory condition OP. You still have a lifetime of chronic inflammation

I find it hard to believe the consultant had the time to breate op for 45 minutes for not accepting his treatment plan, and locked her in the room. I have met many an arrogant consultant but they really wouldnt care enough about a patient declining treatment to lock them in and intimidate them.

ThePawtriarchy · 23/10/2020 16:36

Anyone can refuse medical treatment, nobody should be locked in a room with an aggressive person, especially one in a position of power. The drugs here are irrelevant, just people taking another opportunity to express their superior knowledge over the OP over a question she hadn’t asked.

thesootherfairy · 23/10/2020 20:03

@ThePawtriarchy thank you.
I only added in all the information to make sense if it.

It isn't even about the appointment in Feb as I've already complained about this. It's about the phone call yesterday.

My point with my post seems to have been lost.

It was: why would a consultant you have made a complaint about and an apology about, contact you again?
He was well aware of the complaint because I raised it as soon as he got on the phone. And he said he was well aware of it.

Whether I wanted a particular line of treatment was my question

OP posts:
ThePawtriarchy · 23/10/2020 20:25

Yes @thesootherfairy you seem to be getting a master class on what posters think is reasonable from men - i.e. it’s ok to lock you in a room if their opinion is the ‘right one’ and then continue to harass you afterwards. Know your place, women! Hmm

BoulangerieBabs · 23/10/2020 20:40

@ThePawtriarchy

Yes *@thesootherfairy* you seem to be getting a master class on what posters think is reasonable from men - i.e. it’s ok to lock you in a room if their opinion is the ‘right one’ and then continue to harass you afterwards. Know your place, women! Hmm
Not at all. My rheumatologist is female, been under her for years and she's as forceful when she's trying to make you understand the implications of not treating the disease.
ThePawtriarchy · 23/10/2020 21:00

But @BoulangerieBabs my comment is about @thesootherfairy ‘s consultant. The one she said locked her in a room and continues to contact her after a complaint? I’m sure there are many wonderful consultants out there, but her question was not about those, and neither was my comment.

ThePawtriarchy · 23/10/2020 21:01

But if your consultant is ‘as forceful’ then that might be concerning. Or, does she not lock you in rooms?

thesootherfairy · 23/10/2020 21:33

@ThePawtriarchy thank you.
You've grasped the issue. It's not about drugs ax spa but about this continued contact after a complaint.

However to those of you telling me I'm stupid for not injecting myself with Biologics need to look at the BNF in more detail
They (rheumatologists) really seem to be very pushy about Biologics. Despite the ridiculous cost of them and the extra cost when you develop diabetes, cancer, osteoporosis, brain bleed, sepsis, MS or other demyelinating disorders etc.

Not everyone with non-radiographic axial spondyloarthritis will progress to ank spond or spinal fusion.

In the nearly 12 years since the pain started, I have nothing visible on X-ray. My spine is completely intact and without inflammation.

My SI joints had inflammation but last MRI in June showed no signs of SI joint inflammation so I may also have been completely misdiagnosed (another reason not to touch Biologics!) - clearly id like a second opinion on that.

Have a read of the very informative BNF and scroll down to common and very common side effects. It's illuminating

bnf.nice.org.uk/drug/etanercept.html

bnf.nice.org.uk/drug/adalimumab.html

bnf.nice.org.uk/drug/golimumab.html#indicationsAndDoses

bnf.nice.org.uk/drug/golimumab

OP posts:
MitziK · 24/10/2020 10:29

Look, you're in pain. I get that. God, how I get that. And you want it to stop. Who wouldn't? I don't care about the complaint - make one. Sorted. I'm not excusing him one bit. I've had dickhead doctors (the orthopaedic consultant showboating to his student by deliberately fucking up my shoulder tendons comes to mind) and I've had dickhead nurses who were more interested in finishing their dictation on other patients than actually speaking to me during my appointment and then bit my head off when I said 'I'd really rather not hear about somebody else's confidential medical information during my appointment, thanks'.

Complaining doesn't deal with the pain you have in the meantime, though. Which I do happen to know a shitload about. Particularly as the symptoms started when I was a child, but my mother refused treatment (as she didn't like the idea of the drugs and treatments that were offered other than anti inflammatories and a bit of physio). So they discharged me.

You need to appreciate that people who take these medications tend to read not just BNF entries, but information from condition specific sites, from charities and other sources such as studies into the efficacy and safety of the medications. To get to the stage of taking biologics, we've been reading everything and have probably tried it at least five times - including the ridiculous whackadoodle exclusion diets and all the other things that boil down to blaming us for the conditions. Oh, and we've all heard somebody telling us how terrible it is to take medication/their aunt's neighbour's dog's hairdresser's cleaner's cousin's budgerigar had something just the same like a broken fingernail and THEY DIED OF THE MEDICATION/or they danced naked at midnight after a bath of fairies' tears whilst eating an organic apple and WERE CURED.

You are contradicting yourself by saying it's not inflammatory but you've had clinically significant inflammation. It's not inflammatory but you want a pick 'n' mix of anti inflammatories. If you haven't got inflammation at present, different anti inflammatories aren't going to do anything new. (Well done on not chucking your guts up on the things, though. No stomach protecting medication worked for me. And I had enough that my body decided to develop an allergy to the bastarding things in the end, anyhow. Which was less than ideal just as well it was a rare oral dose that led to developing blisters and burning all over my hands, face and legs rather than the suppositories that had also been prescribed at the time .

With all the good will in the world, as nobody more than somebody who has had constant pain can appreciate the feeling of waking up in the morning and thinking 'Something's different. What is it? Oh. Nothing is hurting', if you can't accept you have a condition that is best treated in a way you don't like the sound of rather than being left in pain forever, there's little else than can be done.

When you get an new referral, after all the months of investigations and waits between appointments, intraarticular injections of steroids can help some people, but they aren't without risk, fucking hurt like a bitch and if you don't actually have an inflamed joint at present, aren't clinically indicated anyhow. They certainly aren't a long term solution even if they do work - they're a temporary relief whilst other medication takes effect or the body heals in its own time. About 6-8 weeks is the usual length of time that they have effect, but the most noticeable is immediately afterwards as the anaesthetic also injected takes effect, the couple of days afterwards as the steroid begins to and then, as you feel more able to move around, the body takes over. If they're actually clinically indicated and the benefits of shoving bloody great needles into joint capsules outweighs the risks of doing so.

Perhaps you are that person everybody on medication has been told about who doesn't actually have anything wrong anymore, but their nerves are telling their brain they're still in pain. If so, antidepressants on a low dosage (usually a tricyclic like Amitriptyline is prescribed in those cases through the GP) may help and, as a physiotherapist will suggest over the phone in an NHS appointment, try following an online yoga routine and going swimming when the pools are open. The risks of antidepressant medication when somebody isn't actually depressed are available online. But they work for some people. Strangely, it's often women who are prescribed these for pain, rather than men. But if they work for somebody, great.

If you want somebody to actually put their hands on you, you're going to have to go private. Maybe a private physio, maybe an osteopath, maybe a sports therapist or acupuncturist could be able to provide relief for muscular pain or faulty biomechanics.

Have a look at your posture as well - sometimes the changes that happen following an episode of back/hip/SI pain mean that you adopt an anterior pelvic tilt out of habit and this then transmits down the skeleton, resulting in you over pronating/straining muscles and tendons. This then creates a loop where you're in pain, so you have poor posture, which creates stresses, which creates pain, which creates stresses and so on.

If that is the case, seeing a podiatrist and getting custom orthotics can help, as having the correct foot position can significantly reduce the impact of your bodyweight hitting the ground and give the muscles and tendons time to heal in the correct position. As an immediate but temporary act, generic orthotics from Boots designed to address plantar fasciitis/heel pain are better than nothing. Depending upon the quality of the arches in your feet, actual arch supports are dearer, but even trying the heel ones could give an indication that it's something worth looking into.

The NHS does not provide all these things to everybody. Different trusts have agreed to fund them, but not all and not in a timeframe that you need.

I don't think they will cure anything that is autoimmune in nature - but they may help and could work if you have been incorrectly diagnosed.

thesootherfairy · 24/10/2020 11:41

@MitziK thank you.

The pain management team won't inject steriods just now.

They want to start (when they start doing face to face again after covid!) to use a series of long acting local anaesthetic over the course of 5 separate injections to find out where the pain is coming from.

I don't have lower back pain or SI pain. I have hip pain and leg pain.
The diagnosis came about after an mri showed si inflammation and that was it.

I tried to explain it wasn't si or back pain but hip and leg pain.

Pain management team think my hip pain is either referred from somewhere else or it is a combination of early degenerative changes in hip joints with greater troncator syndrome (tendon bursa issue which won't settle and is hard to treat). They don't think it is ax spa. They've written to my GP coping me in stating this.

I've tried amytriptyline. I had an allergic reaction with blistering skin rash and really high heart rate and temperature.

You're not keen on exclusion diet. Well the rude rheumatologists is.
He suggested it during the first appointment I had with him where he diagnosed me. He said gluten free would help. Actually he said "it will be wheat. It's always wheat that causes the problem with women" Hmm

I didn't try it immediately. But started it early this year.

Prior to this I had high levels of thyroid antibodies. After 5 months of gluten free there are no thyroid antibodies as confirmed by my Gp who was really surprised. She said to me you normally have them for life and it causes your thyroid to deteriorate.

It was also 6 months after the start of gluten free where the mri showed no inflammation in the SI joints.
I am no longer stiff in the morning either.

However the hip pain persist. And really does hurt. Particularly the right side.

So it's not clear cut and I don't think they're at the bottom of the problem and therefore I don't even think I should actually qualify for Biologics at all much less being put on them.

OP posts: