Not new to RA but struggling

Thepainfairy

Hey, I'm new to the forum.

I've had RA for 20 years so I know the ins and outs but I have had a difficult year and I feel like I'm sliding into sadness. I'm 39, had a THR at 32 and now I need a shoulder replacement.

I've been on Enbrel for 18 years but it's not working so well now so that's been difficult.

I'm particularly annoyed about the treatment I've received from the doctors. My rheum appointment phonecall this week was disappointing. My usually lovely rheumatologist said she was stressed to breaking point, and while I empathise, she was really short with me and I felt like she just wanted me to get off the phone. She basically wasn't interested in what I had to say.

Last year I saw a surgeon about a shoulder replacement, he was also the rudest man I'd seen in a long while. He wasn't interested in my quality of life, happiness or anything and just kept repeating that I was too young for a replacement (he actually scoffed at the fact I'd already had one) and kept repeating that 1 in 4 fail. He was so dismissive and patronising. I left really upset. This happened with my hip, I saw 3 surgeons before the 4th said he'd do the surgery. I had just forgotten about the treatment I received.

My question is, why are these 'professionals' so unprofessional and what can we do about it?

Tom

Welcome to the forum @Thepainfairy. I understand that you have had RA for some 20 years but are currently having difficulty in getting adequate, sensitive medical advice. Any NHS patient is entitled to choice in consultant and indeed hospital. I believe that your starting point should be your GP. You would find it useful to speak to our Helpline team 0n freephone 0800 5200520 9am to 6pm.

Here is a link to the NHS website which should help:

https://www.nhs.uk/using-the-nhs/about-the-nhs/your-choices-in-the-nhs/

Variation in standard of treatment is a concern to may. Keep us posted as to your progress and good luck.

stickywicket

I'm sorry you've had such a tough year. I've had RA since I was 15 and I know all too well how these prolonged spells of roughness can sap our emotional strength as well as the physical stuff. I think my worst was when, in the space of three months, my little boys went down, in relays, with measles, whooping cough and mumps and then the elder (8) got meningitis. While he was in hospital I don't know how I dragged myself down the long corridor to rheumatology only to be told, brightly, "Well, according to the blood tests, you're OK." I was devastated as I could see not prospect of relief but he did send me to x-ray and the upshot was "You need new knees. Now." And I got them.

Shoulders can be very painful indeed. OK we don't actually stand on them but they are so difficult to get into any sort of reasonably comfortable position when they're bad. Thankfully, mine have both sorted themselves out into a situation of very little movement but also very little pain. I'll take that. If your orthopaedic surgeon has said you need a new shoulder I'm surprised he's not put you on his list though all orthopaedic lists are ridiculously long now. Have you signed Versus Arthritis' petition on Joint Replacement Times (see thread above)?

I'd guess that this may be one reason why orthopaedic surgeons in particular but all consultants in general are feeling thoroughly brassed off. Every day they must tell most of their patients that, no, they can't have the coveted new joint yet or, indeed, for ages because there are too many waiting and still too many wards and nursing staff given over to covid. As I was reminded recently, if one patient tests positive the whole ward can take no more patients. 

A consultant I know worked through the worst of the pandemic even while her sister-in-law lay dying of covid in the same hospital. They are people just like us. They have bad times and good. I've been lóoking back over all the consultants whose hands I've been through. The five rheumatologists were all great people. So were most of the orthopaedic guys though a couple seemed very new and unclued up re RA. Surgeons for other assorted bits of me all great. Though I did have just one ward doc who was horrible. Even the nurses said "Everyone has bad days but she never has a good one."

I guess what I'm saying is that I don't agree that 'these professionals are so unprofessional' but, if you have concerns about a particular one, you could seek advice from PALS. Meanwhile, I hope your rheumatologist was able to tweak your meds to make things a bit easier for you if, indeed, the problem was the RA. If it is / was OA then your GP can sort out some pain relief. Have you tried theersus Arthritis' page on exercises? They really help.

Lilymary

I'm sorry you've had such a disappointing experience with your various consultants. I understand how this can be so distressing.

Why are they "unprofessional"?

1. They are human. They have bad days like everyone else.
2. They are human. Some are better at their job than others.
3. They are employees. They are not fully in control of the services the NHS can offer, nor the timescales.
4. Our expectations may be unrealistic.
5. They really do know better than us about their field of expertise, but it's a different perspective from that of the sufferer. There is sometimes a disconnect betwen the two.
6. Their primary job is to fix bodies, not people. This means a surgeon can be brilliant while having apparently appalling manners. I gather from medic friends that this is notoriously common among surgeons. In the same way, a motor engineer may be a whizz at tuning ferraris but you might not want to take him home to meet your mother.

I had a client who rang me the night before my hip surgery and wanted to discuss in enthusiastic and minute detail his latest project. I did my best to sound interested, I really did, but he couldn't see me wringing my hands and banging my head on my desk through most of the conversation as I was much more concerned about what someone was going to do to my leg with carpentry tools in 18 hours time. I did eventually have to cut it short, after about 30 minutes of this, and I hope he didn't think me rude, but it wasn't appropriate for me to tell him my problems and why I was so distracted and stressed, and I decided that on this occasion I was just going to have to risk upsetting him.

But I do sympathise. My first ortho surgeon had the same effect on me. He was very cheery and undoubtedly competent, but oblivious to the patient sitting in front of him - he only saw the xray image. In our first meeting I got a long lecture about Andy Murray's new hip and the absurdity of the Covid measures, and apart from how many painkillers I took, he didn't ask a single question about me. Not one. He also spent more time telling me he couldn't give me my old life back and extinguishing any glimmer of hope than saying what having a new hip would do for me. At every following encounter he left me profoundly depressed. As it happens I ended up changing surgeon for clinical reasons, but had I stayed with him, while he seriously rubbed me up the wrong way every time, I bit my tongue, massaged his ego to get the best possible performance out of him and had no doubt that had he been the one to replace my hip, it would have been a complete success.

Having good people skills is not necessarily a sign of being a good surgeon. I tend to have more confidence in those who cut through the script we carefully prepare in our heads before we see them to get to the important facts, as it will be this they base their clinical judgement on. They already know we're in pain, that's why we're both there, but it's hard not to go away feeling you haven't been listened to. Sadly the NHS doesn't have time for hand holding at consultant level, and leaving us frustrated is the unfortunate consequence. That's why forums like this are so valuable. We deal with the emotional support, they deal with the clinical treatment.

To answer your final question, "what can we do about it?", if you feel strongly about an issue, the PALS service will investigate complaints. My own experience of this (not ortho related) was that a throwaway comment from me in their suggestions box about a fairly minor issue with the hospital building turned into a full scale investigation and detailed report and I was horrified at the amount of NHS resources that were wasted on this.

You can also ask for a second opinion, and I see you have experience of this, with some success.

You can also ask to see your medical records - this link gives more information.

https://www.patients-association.org.uk/seeing-your-medical-records?gclid=Cj0KCQjwu7OIBhCsARIsALxCUaMl7QZfWxMhlxTpY80qY4CWuXLbh1JdpOV_MiqLcfMg1eey0KzLeD4aAo_wEALw_wcB#four

But I also know that surgeons do care about their patients, despite appearances, and care a great deal about getting a good clinical outcome from the treatments they provide, and that's what really matters.

Thepainfairy

I agree that doctors are human. But as a teacher, if I said to my students, sorry I'm really burnt out right now, can you tell me your main problem and go away, I would be hauled into an office and given a disciplinary. Likewise, if I worked in a shop and told a customer, sorry I'm too busy to help you, I would be out the door. Most jobs would do the same, why are doctors exempt?

I understand that I should be on a replacement list. The problem is surgeons look at me and tell me I'm too young. I saw 3 surgeons before the 4th agreed to replace my hip, and even then it was a change meeting with a private hospital MD on an aeroplane that got me on that path. It's not even about the waiting time, it's about being dismissed as a person in pain with reduced quality of life.

I will go to PALS as I don't see that improving a service is a waste of resources. It's a necessity to avoid vulnerable people being treated as if they don't matter.

Bic1982

Hi @Thepainfairy,

I just wanted to say hello after reading your post. A lot of what you have said, I feel that I can relate to. I too was told that I was too young for a TKR around 18 months ago.

I was 2 when I was first diagnosed with JRA and I am now 39. As you can imagine, over the years the RA has done some serious damage to my joints to the point that I was told I had knees of an 80 year old back when I was in my early 20's. It wasn't until I was in my early 30's that my team of drs decided that it might be time for surgery. I didn't have much problems with getting my hip and right knee replaced but by the time I got to my left knee, the surgeon (different from previous ops) didn't want to do it. He decided that he wanted to have a look inside first, with the hopes that he could shave and smooth over the joint. This procedure made my knee worse, but when I went back to see him after, he apologised and said that he should have listened to me since after going inside my knee, he could see how badly damaged it was and unfixable other than surgery.

It was so frustrating not being listened to, and after having to deal with the 'too young' label my whole life, I was surprised to hear it from a surgeon after having had other surgeons had replaced other joints.

Anyway, I just wanted to say you're not on your own and to hang in there. I think going to PALS is a good idea. At the end of the day, we can all understand when someone is stress, but your dr is suppose to be there to support you and if that's not happening and you don't feel like you're being listened to then you should speak up.

All the best.

Bic x

stickywicket

I can 'hear' your frustration and anger and, as a former teacher, carrying a class-worth of exercise books home with arthritic hands, feet and shoulders, I can see where you're coming from though I have known teachers who simply set the class some work rather than actually teach. or who took a sickie. Neither is right or good but they do happen and teachers get away with it..

If you want to improve the service I strongly recommend you to sign Versus Arthritis' petition on the 'Impossible to ignore - Joint replacement waiting times' thread above, which I mentioned previously, but there is no getting around the fact that there are not enough surgeons and that all other resources are understaffed - theatre staff, HDUs, physios, OTs, the list is endless. 

It's not a personal thing. You'll see, from these forums, that loads of people are, like you, left high and dry with no available date for an operation. Your surgeon was frankly wrong about the number of failures but, even so, joint replacements don't last forever, the younger the patient the more likely that a revision will be needed and revisions are a trickier operation carrying more risk and requiring more theatre time. One of my TKRs was revised. The other is now totally wrecked and the THR above it - my youngest joint - is working into my pelvis. Neither can be revised as the chances of breaking into my pelvis are too high. It really is best to wait as long as we possibly can.

However, if you feel that making a complaint to PALS is the right thing to do to improve the service then, of course, you must do it and I wish you well.