Relative of RA suffers and Consultant's

[Buzz2010]

Hi al,

Anyone on here that is a relative of an RA sufferer. If so do they get resistance from their consultant should they ask questions at reviews?

[nomoreheels]

Hiya Buzz2010, welcome. Am I right in saying you are a relative of someone & has accompanied them to a review? If so & the Rheumy isn't happy you asking questions then is there a particular reason? Were you asked not to contribute? I ask as my h always accompanies me & very much involves himself & never had a problem whichever Rheumy or Registrar I see. I of course lead the appointment & he only contributes if there's anything I've missed or he can answer something I haven't recognised so of course doesn't take over the appointment.

What has the Rheumy said for you to post this question?

[Buzz2010 in reply to nomoreheels]

Hi and thanks for your swift reply .

I have met with resisitance at evervy review to extent i receieved a written warning as they feel i am challenging. I am only challenging as if i dont ask any questions, i think my husband would be pushing a zimmer frame by now.

just to give an expample of what happens

Last consult after the normal say not much from my husband . I asked if there was an option of an increase of my husbands Humira injection from fortnightly to weekly. Consultant replied it could only be done for Pt's with Chrones. I repiled i had read it somewhere. I could not remember where. I found the info on the Humira leaflet when we got home and wanted to advice the Consultant when i found it. Consultant rang after my husbands latest blood test, to which i was not part of . He advised my husband that he wanted to chnage my husbands medication and recommended Rituximab infusions.

One question my husband actually asked was. How long does it take. The consultant advised about and hour and 2 weeks laterthe same and then he should not need it.

Me being me i looked the medication up and noticed it takes 5-6hrs and then a less time the second time and he would have to have the infusions every 6-12months.

when i told my husband this we had a huge argument as he thought the Consultant would know this info. My husband had also agreed to have the infusions (stupid man, i was always told never make rushed decisions). When the Rhuematolgy nurse rang him he asked her the question . She confirmed what i had said to him.

To say the least my husband listens to me a little more now.

Anway moving forward finally last week after my husband spoke to his RA nurse and declined the infusion and said that he had asked her last month to get the consultant to ring me the consultant finally did. The consultant said he would not discuss anything with me as my husband was not there. so as you can imagine we are no further forward

i just wonder how many mens wifes meet resistance ?

[nomoreheels in reply to Buzz2010]

It's a difficult one. I don't have this issue because whilst we both attend one another's (my h also has continuing health issues) we each involve ourselves in our own Consultant appointments. Your h obviously doesn’t & you take it upon yourself to lead the appointment. It would help if his Rheumy understood this so maybe next time explain why you ask the questions (because otherwise the appointment may not be used to full advantage), see how the land lies then. Not sure why he said as he did re Humira, but you now have the correct info.

The Rheumy is correct to not to discuss anything re your h on the phone I'm afraid, patient confidentiality as you're not his proxy, he is capable of discussing his condition himself.

I wonder, how about in the weeks prior to your h's next appointment you both write appropriate bullet point questions of problems or questions he has that may have arisen since his previous appointment. This way your h can see that he may need to include himself more & if you both agree use this list in order for your h to conduct the appointment with his Rheumy himself?

[Buzz2010 in reply to nomoreheels]

just to add the Consultant was asked by my husband to ring me via his RA nurse as there where unanswered Q. So my H had given permission.

[AgedCrone in reply to Buzz2010]

Sorry Buzz, but t is not resistance when the Consultant declines to discuss your husband’s condition.....he is just not allowed to. Patient confidentiality is a minefield & unless your husband is incapable of deciding which treatment he agrees to have, the Consultant can only discuss his treatment with his patient.

There are different ways that Rtx infusions are prescribed....if you have a high DAS you will have two infusions ...2 weeks apart ....every 6 months. These infusions are usually timed at 5/6 hours, then the time is reduced according to how the patient reacts....I can now tolerate 5 hours.

Sometimes two smaller infusions are given two weeks apart, this seems to be what your husband’s consultant was thinking of....but the rheumy nurse hadn’t been told, or hadn’t read the notes.

I expect there are even more ways Rtx is administered too.

I have been on Rtx since 2016 & have just had one single infusion which will hopefully last 6 months....but nothing in RA treatment is straight forward....I could be back on 2 infusions in 4/6 months.

Re Humira....if your husband’s doctor had decided he needed it every fortnight....quoting a PIL at him would not- as you found- be well received.

Patient information leaflets are guidelines.....RA drugs are given for other auto immune diseases......which would not be written about in detail but the prescribing doctor would know the dosage for his own patient.

RA/RD is a very complex disease.....and treatment for every single person is different, and as you have found challenging a Consultant Rheumatologist by quoting information you have read in a PIL, is really not the best way to get the most suitable treatment for your husband.

Sorry, but that is the truth.

Maybe next time your husband could go in to see the consultant alone for an examination,& you could join later when the doctor & your husband have discussed how they both feel his treatment should proceed?

As you know stress over anything really is not good for for those of us under treatment.....so maybe let your husband take the lead & see how his RA reacts if he accepts his Rheumatologist’s clinical diagnosis & treatment.

It is a very unenviable postions to watch a spouse suffer, but as you know finding the right treatment is often very difficult,& can take a long time....so try to help your husband relax. Believe me having a good honest relationship with our rheumatologist is a major factor in how we progress.

I do hope your husband’s next appointment is more successful.

[nomoreheels in reply to AgedCrone]

Pleased you've given your knowledge of rituximab, I hope this helps clear up any possible misunderstanding between Rheumy & Nurse's info.

[cathie in reply to AgedCrone]

I’ve been on rituximab for several years and it’s been very successful. I often go with my husband but always ask the practitioner if it’s ok. He makes notes. Only asks questions if there’s something we’ve already discussed that I’ve forgotten.

[KittyJ]

My husband has been to appointments with me and asked questions of the rheumy. There’s been no resistance, they’ve always welcomed questions, Have you had resistance Buzz?

[Buzz2010 in reply to KittyJ]

Yes. Huge resistance . He almost prefers me not there. Being a man that until RA dianosis has not been unwell. He thinks they are all god. I however prefer to ask Q. From apt at GP and being refered to wrong Hosp to date we have had nothing but issues. It has been 2 years in may since diagnosis and my husband will sit there and say nothing . We as a family are having to contend with him and his condition, he is still of working age and is self employed . Still doing a job he enjoys. So for me its hard to sit and say nothing as knwo what he is really like.

If im honest my husband cannot explain things well and will only the answer questions he is asked to him with a umm or yeah. He never asks a question.

[KittyJ in reply to Buzz2010]

I think the difference here is that I definitely lead the appointment, my husband is there to comment on or ask things that he wants to know but mostly it’s me and the consultant talking. Whereas it seems in your situation that you are doing the leading and the consultant isn’t understanding why. I think it’s a good idea, as already has been said, that maybe you need to explain to the consultant why you do this. Could you email him or write a letter if you can’t get to speak to him. The bullet points for your husband to use are a good idea too. I do this so I don’t forget anything.

It’s a difficult situation because you and your family are dealing with the issues that your husband is not bringing up and discussing in his appointments.

[AgedCrone in reply to Buzz2010]

Remembering back to when I had just been diagnosed I remember how nobody understood why I had become so quiet & withdrawn...I can tell you why......RA is not a walk in the park.

It’s not the odd back ache, or crick in the neck or swollen ankle.

It is a serious, painful, long-term auto immune disease that needs careful diagnosis and even more careful ongoing treatment.

You say you “as a family are having to contend with him & his condition”

as if it is something he has developed on purpose.

Have you really thought through what he is contending with?

He is in pain, he is probably depressed , worried about the disease & about his future..... ...& he is having to go to work to support his family....all the time feeling very poorly.

I am sure none of us here on this site who are unfortunate enough to have RA would like to believe our families are just contending with us. The majority of us have supportive friends & family who show care & support & help wherever they can.

I am sorry if this sounds harsh.....but your husband really needs support right now.......he needs to be able to trust his doctors & to take their advice, in order to get settled on suitable drugs so that he can get on with coping with this horrible disease.

[cathie in reply to AgedCrone]

Gentle support

[allanah]

My husband comes with ne and gets no resistance but when I question doctors at my daughter in laws appointments they look as though they dont know the answers !

[AgedCrone in reply to allanah]

Maybe they don’t know the answer straight away.

My rheumy is very honest & if he doesn’t know an answer he says so.....but keeps the Q in mind & if he finds an answer he let’s me know.

[Buzz2010]

Thanks for your responce. I am actually thinking this myself .

My husband has made contact with his Dr at the surgery and request a transfer to alternative Hosp as i think he has lost faith in the consultant.

[Stayloose]

I am a wife of an RAer. It's a tricky balance that's for sure. I always bear in mind it is his disease not mine. When seriously ill I have needed to be his advocate but at other times say little as it's important he asks what he wants to know. He goes to GP and Nurse appts on his own but I accompany him to Consultant Clinics. We discuss questions to address before we go. If I feel they haven't been asked or answered I will chip in and my OH appreciates this. I have never experienced any resistance from medics. Medics can get tetchy if they feel criticised so some questions have to be phrased carefully. Whether this should be necessary is another matter.

[Mach13]

Sounds like a tricky one this... FYI My wife has had RA for a few years now and I attend with her. She makes notes before hand and we discuss what she wants to achieve from the visit beforehand.

But... sometimes she has a foggy head and so doesn't get everything clear so those are the times I pipe up and asked for clarification on her behalf. I have never felt this to be an issue.

It is heart wrenching to see her struggling with her pain and aches and getting muddled as she does and I do understand why you want to be helping to ensure your husband gets the treatment he needs. I am always mindful that the Consultant is there to see my wife not me, so I keep my tone even and mild. The consultants she has seen so far have been fair but, of course... as professional as they might be... they don't love her the way I do, they don't see what she's like in between appointments like I do so... Yes its incredibly hard to see your loved one suffering before your very eyes so yes I get involved when I think my wife is struggling to get her point across. And for 95% of the time i'd say I feel that I'm heard and that my questions are respected. But my questions always reflect the discussions I've had with my wife pre-appt. So were (hopefully) on the same page. I'm sorry you've had such a tough time, but you are in the right place to get help. I sincerely hope things improve for you both in the near future

[Leics]

My husband usually always accompanies me to rheumy appointments however sometimes he can’t always make it because he has to take annual leave from work. It’s got to the point where if he’s not there my consultant always asks where he is 😃. I’m very lucky I now have a fab rheumy who’s care of me is second to none, my husband and I have an agreement that I usually ask the questions and listen to the advice but he does chirp in sometimes with stupid questions but that’s because he doesn’t know as much as me about RA and he cares but if he thinks I’m doing the usual ‘brave face, I’m fine’ routine he won’t let me get away with it. Having a supportive relative is so important during consultations however the docs cannot cross the line with patient confidentiality or they’d be struck off, so unless your husband is incapacitated and unable to speak for himself for whatever reason they will never discuss him with anyone whether they’re his wife or not. The only way around it is if he’s sitting there with you and he gives specific permission that you can speak on his behalf whilst he listens in. There should never be any exception to this unless there’s a solid reason eg. patient has had a stroke, if profoundly deaf and can’t lip read, doesn’t understand English or is under the age to make decisions for themselves.

[Buzz2010]

Thanks for all your advice. I think the tip about writing a list for him to say is really good. I will get him to take that forward to his next meeting.

I think as somebody said about their loved one . He gets a foggy brain. Whether as a result of RA , Medication or age, who knows.

This way the vital questions he needs to ask will be answered. So moving forward the list will be a blessing i hope.

Thanks again