Got to get this off my chest!

[Philjania]

After 2 years of not seeing RA consultant and being in a constant flare for all of that time (mtx and Hyrimoz and steroids just aren’t holding) I finally got to see an underling yesterday. Knees are particularly bad, swollen, painful without respite day and night. This guy (never seen him before and he didn’t give his name) tried to tell me that because I’m sero-negative, I actually have osteoarthritis not RA. So for the last 25 years I’ve been misdiagnosed then??? A heated debate ensued as I asked where and how he could come to that judgement. He referred to an X-ray from 5 years ago where the report said I’d got mild OA in my left knee as to be expected of a person of my age. The debate ended there. I then asked for some relief by aspiration of my knee and a steroid/anaesthetic to try to reduce the inflammation and pain. Jeezus, I’ve had many done before but this guy just wanted to inflict pain. Half arsed attempt to aspirate, he went in from the wrong side and drew nothing but blood. I’m now left in agony and can barely stand and walk. Hopefully it will settle. He also left anaesthetic out of the steroid injection. I seriously doubt that he’d ever done one before.

At the end of the appointment, he expected me to get up and leave, ‘not without a treatment plan’ said I. ‘Oh I’ll have to speak to the Rheumatologist to see what they think as you’ve had all treatment available and you won’t get funding anyway for more treatment’ he said. Utter tosh, there are at least another half dozen biologics available and there has never been an issue with my local CCG authorising treatment - I’m on my seventh biologic now.

There will be a complaint going in.

[Deeb1764]

Gobsmacked reading this I have OA with my RA and both treated and acknowledged as different issues. PALS complaint needed 😘

[Ali_H]

Flaming heck! Is the only polite expression I have for that debacle.

[sylvi]

What a""e he is.xx

[Philjania in reply to sylvi]

He was not remotely interested in trying to find a way forward or coming up with a plan. He shouldn’t even be practicing IMO. Only been in this country for a year, could barely speak English and didn’t understand what I was saying. That’s factual not racist before the snowflakes start.

[Nessa28]

I feel so sorry for you , but you’re not alone . This has happened to me in December and they have discharged me without even seeing me for over a year as they feel there’s no inflammatory arthritis , as zero negative . But here I am now in a full flare back on steriods and back at the beginning of another fight . To be honest I’m so done and tired of the whole thing . I’m having podiatry , and orthopaedic consultants looking at me in amazement as to why I’ve been discharged . They have written to the rheumatologist and have been ignored . I’m not going through Pals again it was a complaint that started the ball rolling in the first place .

[Philjania in reply to Nessa28]

Yes, I think PALS is a flag for them to treat us like troublemakers. Ironically the clinic team used to be the best and really got my RA under control until about 6 years ago when the team changed a little and one person picked up on my raised ALT liver function. This is normal for me but the clinician wouldn’t listen and stopped all meds. Gone downhill since. BTW, fibroscan and MRI both confirmed no liver damage and I’m just one of those cases where my normal level is much higher than their normal. And STILL they go on about it… hope you get the treatment you deserve soon.

[Deeb1764]

I would also call Hidden or the team there as there must be some way to explain to us why they would go down this route and how to argue against their decision too. This disease is hard enough without all these constant battles for healthcare and fairness with kindness.

[Philjania in reply to Deeb1764]

I agree, and these battles are throughout the NHS. They seem to forgot what there job is. We are sick, treat us properly. As a typical example, my wife has many serious health issues, the most serious being bronchiectasis with only 30% lung function (caused by untreated tonsillitis which then developed into pneumonia, untreated because she was ‘fat’, see the next bit). She also suffers with Lipo/lymphoedema which means that she has abnormally large arms and lower body and carries a lot of weight because of this. Her chest physician has referred her (behind her back) for weight loss surgery - ignorant of the fact that the disease is not controllable by diet at all. The physician knows this but chooses to ignore the facts and doesn’t want to know. Good job her GP understands and wrote a stonking letter back to the physician. We expect her now not to be seen again in that clinic because she stood her ground.

If you sat back and thought about it all, you’d just give up!!

[Mmrr]

A written complaint...absolutely

[Philjania in reply to Mmrr]

24 hours on and in agony. Never had this before - ham fisted amateur who shouldn’t be let loose on patients. Complaint coming….

[Deeb1764 in reply to Philjania]

Ideally get someone else to re read letter as a letter when angry you sometimes forget the finer points and forget to mention what you see as a satisfactory answer. Just a thought but I know my first complaint I was seething so threw it all in and kitchen sink!

[Philjania in reply to Deeb1764]

I will. And thanks!

[Mmrr in reply to Philjania]

Polite but firm a d straight to the point.

[Hidden]

People who are sero-negative seem to have a history of being ignored. You need to see someone with greater experience. I would contact the Rheumatology nurse and ask to be ‘under’ someone with experience of this.

[Philjania in reply to Hidden]

All was good until about 5 years ago when registrars were taking clinics. Most of them are not even RA specialists, just on their journey to private practice or GP work. I’m on the case!!

[Pippy25]

I am so utterly saddened to hear how awful this person was and the way you were treated. Sending you some warm wishes and let's hope that you can get to speak to someone not only about the way you have been treated but also as to getting someone else who will listen, respect you as a person and have a plan for a way forward working with you and not against or looking down on you. Take care xx

[Philjania in reply to Pippy25]

Thank you.

[Hidden]

This is indeed a shocking account. I would suggest you contact the PALs at your hospital. If you are on a 7th biologic it is clear you have RA as biologics are not used to treat osteoarthritis. However like Deeb1764, it is possible to have both RA and OA. If you are able to speak to the specialist nurse at the hospital to ask if possible to switch to a different consultant if you feel you're not been listened to by the current one. Getting that rapport with your clinician is so important. If you feel you're getting nowhere please call NRAS helpline 0800 298 7650- sometimes (and I can't always promise this) but sometimes, a call from NRAS to someone within the unit can 'oil the wheels' so to speak. Good luck and I truly hope the pain is easing in the meantime.

[Philjania in reply to Hidden]

Thank you Clare. The clinic lead rheumatologist is brilliant - it’s just the underlings that are useless. I spend more time telling them what’s already in my notes. It’s almost like it’s a test. This guy just did not know what to do.

[Hidden]

Shocking! Yes complain.

Isn't it exhausting having to do that on top of health worries... hopefully you will get some answers soon.

Take care 💐 xx

[Philjania in reply to Hidden]

Thank you 😊

[Bella59]

Sorry to hear you have been treated so badly.Complaint should definitely be put forward.Hopefully get some answers soon.I have also experienced a junior doc trying to remove fluid from my knee in AE.Went in wrong side agony had to get a doc down from Orthopedics to remove fluid done properly hardly any pain.