Horrendous appointment with consultant

jenzie06

I had an appointment with my consultant. They asked my husband to accompany me which is really unusual. Thankfully he managed to take time off to come with me.

The first thing the consultant said was 'I think you had some inflammatory arthritis years ago but now I think its a chronic pain thing and all in your head'.

I've had RA and Fibromyalgia for over 20 years.

I don't respond well to the medications. I've tried everything. They either don't work or work for a while then stop or I have an allergic reaction to them. She said this was because I didn't have RA. We pointed out the meds that have work but I've become allergic or they've stopped working. She said I shouldn't call one of the reactions anaphalatic shock. I pointed out it was the hospital that called it that and I required the crash team and two lots of adrenaline to get me breathing again. She then said I wasn't allowed it again as I would end up in ICU on a respirator. She was contradictory all the way through.
We pointed out the damage in hands, feet and pelvis. She said it was osteoarthritis. We asked about the damage to my tendons and ligaments that have required numerous surgeries to fix. She conceded that this probably was RA.

I attended the appt in my wheelchair (I am unable to walk very far, such as a shopping trip around town due to pain in feet, ankles, knees, pelvis and back plus the fatigue means I can't do anything else all day, using the wheelchair helps) my ankles and left knee are flaring at the moment. They are swollen and really painful. She said that swollen ankles were normal and everyone had them. She gave the impression that I was overreacting by using the wheelchair and basically 'milking it'. I though perhaps i was being sensitive but my husband agreed that this was the impression he got too. He also said that if his colleagues at work spoke to people in the same way as she spoke to me then they would be getting some serious feedback. He said it was awful.

She said I should see the pain team (something I've been asking for the past 15 years and have been always told 'no' even by her!). She said I needed psychological help and CBT. I was made to feel like a fraud and an over reacting crazy person. The rheumatology nurse who was also present insinuated I would sit at home doing nothing than thinking about how poorly I was and becoming anxious about everything. I have two small children. I do not have time to sit at home fretting myself into ill health. I would kill for a job, for money to spend on my kids and to stop having to rely solely on my husband to pay for everything. I though the consultant knew me better than that. She's been my consultant for years.

A couple of years ago I went to the rheumatological hospital in Bath for a second opinion just so I knew I was on the right path as I thought my consultant was struggling with a treatment plan. They confirmed a diagnosis of RA and diagnosed the extensive damage in my pelvis (I'd been saying for a while that my back and pelvis was hurting but it was always brushed off). My consultant said I went to Bath to discuss my Fibromyalgia diagnosis, conveniently ignoring the RA diagnosis which is writing from Bath. She tried to say my pelvis damage was due to ankylosing spondylitis when the prof at Bath said it was RA.

In the end we came up with a treatment plan which involves a referral to the pain clinic, to go back to baracitinib (why if I've not got RA?!) on a smaller dose (despite it giving me continuous pneumonia and chest infections - its was constant for 2 years while I was taking it before stopping, I felt so ill and was unable to exercise meaning I put on weight, she pointed that out on a previous visit too) but I'm not starting it until I get back from my summer holiday so the chest infections wont stop me going. I am meant to be getting a steroid injection before i go to help. However, when the letter arrived from that appt she said the meeting before I go is to see how I am getting on with the Baracitinib. She can't even get her own notes right!

I managed to get to the car before sobbing.

I really want to write and explain how she's disappointed me, she's lost my trust and how a successful treatment plan is dependent on working successfully as a team. I feel that she's made her mind up based on inaccurate and incomplete notes and because she can't get the treatment right has decided its all my fault because its all in my head. Everyone I've told what she said has been horrified and has said I'm not the person she's describing.
She is never present when I have the reactions and tried dismissing what happened (the latest one gave me a rash and started to close my throat within half an hour of taking it) however, the nurses and doctors present agree its a reaction.

I have decided that I cannot be her patient anymore as the trust has gone but I want her to know why I'm not coming back. Can anyone help me write the letter, every time I try I just get so cross?!

jenzie06

Sorry for the epic post.

stickywicket

I'm very sorry you're having such a difficult and worrying time with your rheumatologist. It's so important for us to work well with our docs and, where there is such a gap, it does seem hard to believe you can continue to work together to improve your health.

Frankly, although it's easy with a GP, I'm not sure if it's possible to change a consultant . It might help if you had a word with your GP once (s)he has got the rheumatologist's report.

I think, in your situation, my first thought would be to contact my local PALS group. They are very good at advising on difficult medical situations. You can find your local branch here https://www.nhs.uk/Service-Search/Patient-advice-and-liaison-services-(PALS)/LocationSearch/363 I hope they can help you to sort something out.

On a purely different note – did you manage to get travel insurance for your holiday?

BettyMac

That all sounds very upsetting.
Time to find a new consultant! I agree with SW that a chat with your GP and another with PALS could be the way to go.

Elmbow

I think you're right that once the trust is gone it is better to find another consultant. Sometimes it's better the devil you know, sometimes the continuity of care is too important to jeopardise, sometimes a damaged relationship can be repaired. But when the trust is gone, it's gone. I put up with my first consultant way too long and really regret it.
You'll be pleased to hear that when I made the switch it was surprisingly easy. I can't guarantee you'll have the same experience, but it is possible. I asked PALS if I could switch consultants, they put me in touch with the rheumatology service manager and I was given the consultant of my choice. It really was that straightforward. I didn't even have to give a reason (they did ask, but I was under no pressure to give details).
That was at a major teaching hospital in London. However, if your rheumatology department is small, it might mean you need your GP to refer you to a different hospital simply because there aren't the options to switch.
As for writing a letter, I think it's a good idea. Again, I regret not doing it. I didn't want to rock the boat, or be seen as a difficult patient. Instead I let things fester until it was quite stressful. It's unlikely to make a huge difference to them (unless lots of people are complaining about the same thing) but it could help you.
Keep to the facts and avoid emotions. You can tell them how something made you feel, without putting the emotion into the words themselves. You can state what the doctor did or said, but never state their motives because if you're wrong it undermines your whole position. It could also potentially be defamatory which, while unlikely to get you into trouble, again undermines your complaint.
e.g. You can say "my recollection was different to what the doctor reported", but you can't say "the doctor lied"; you can say "She said XYZ and that made me feel as though my pain was not believed", but you can't say "The doctor thought I was milking it".
I hope this helps. I'd recommend taking your time and looking at all your options regarding changing consultants. Good luck!

Starburst

Oh I felt your pain so much when I read that. I felt angry and upset for you. I agree that once you’ve lost confidence in a consultant, moving forward with a relationship is not going to work.

I would suggest you leave it a few days before writing a letter. Allow your emotions to settle and clarity will come.

I could be wrong but I have found that, sometimes, when a patient is complex or doesn’t fit nearly into a box, some doctors start to back peddle and throw mud at anything until it sticks. This is highly unhelpful for the patient. You know you have RA and she knows too but because she doesn’t know how to help you, she’s gone down this road instead of admitting this is more complex that she’s able to deal with. People tend to respect doctors more when they admit they don’t know.

I am really sorry for what you’re going through. Do you have a rough idea of what you want to say? Drop me a PM and I can help you. I’ll have some time over the weekend, for sure.

Take care x

stickywicket

How are you feeling now, jenzie? How did you decide to deal with it?

Jackie47

It makes me so cross that a professional can treat their patient badly. Don’t they know how we strive each day both physically and mentally. As said it’s quite easy to switch. I’m moving my care to another hospital because since my wonderful consultant retired the dept has gone to pot. Wishing you all the best and empowerment to do and get what’s right for you.