Can you ask for a second opinion and see how things go ? And does your original Rheum have to know?
Got my
clinic appointment on Friday and my G.p of 40 years wants to see me next week with a possibility of changing hospitals.
Really like my Nurses but the Spr I usually see well. Doesn't listen examine me and really upset me on last visit so very apprehensive of going. I do not have anyone to go along with me.
Your experiences would be welcome.
I am keeping busy by organizing a fun dog show to raise funds for Rheumatology at the Children's Hospital. Want to buy buzzy bees to help the kids with their injections.
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moomie
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He has been on leave. My G.p wants me to find out when and if he is returning.
I am going to be straight with the Spr make him listen to me. See what happens. I was ill last time and didn't have the energy to stand up to him. Stronger now.
You are absolutely within your rights to request a second opinion. I did after I was unhappy with my first rheumatology consultation and was so glad I did. You really need to have a team of people around you that you trust when you are feeling like this!
That's a real shame that you've not seen your consultant. Have to say, apart from that initial consultation, the support I have received from hospital staff and GP has been amazing. Definitely ask for a second opinion if you're not happy, don't worry about what your rheumy consultant will think. After all, its not him/her that upset you, it was the SpR. You need to put yourself first.
Write a list of your questions. Make sure that when he starts to ease you out of the door that you look at your list and check they have been answered. If you need to be really assertive do a copy of the list to give to him as well!
Make sure you have a record of what has been happening since your last appointment with the dates and how long each symptom/sign lasted. That helps the consultation to be more organised and makes sure you don't forget to tell him anything important.
Thank you. That is good advice and I am going to do just that. A lot has happened since last visit. I also have photos of a strange rash on both legs too that I will insist he looks at.
I changed as i would leave my appt in tears, through sheer frustration, i was expected to know everything as i am a nurse, My Rhumatologist and nurse would tell me i was doing great and deferred any questions i had. Thank goodness my GP listened and was happy to refer me to london, First words after a gentle handshake was i know your a nurse, however i'm not going to assume you know anything and will discuss results and treatment with you. The nurse phones me with my blood results. I actually feel i'm no longer alone.
That's just how I feel. I do not really understand what is happening. Had been well controlled until about 20 months ago.
Your new team sound brilliant that is all you ask understanding honesty and someone who listens and cares. We don't want to have this disease so have to manage it the best way we can.
I have been paying for private physio and he is like that. He is also pushing for me to change , he used to work in Rheumatology for the NHS.
I am very lucky I have a great consultant and now seeing her deputy who examined me and explained she was going to up my meds and the reason why they seem very caring and take time with me and the specialist nurse is excellent and has referred me for occupational therapy and going to send me material about food diet etc
Oldtimer is right take a list, I write one, place it on the desk when I go in and tick off my questions as they are answered, it is also helpful if something comes up in the consultation that you are unclear about write it on the list there an then, so it does not get forgotten.
Your body, you have every right to a second opinion it is really important to build up trust and respect with the person you are seeing.
Good Luck with the fund raising for the buzzy bees.
Thank you, as old timer says I have my list ready. Good point about writting down things that come up too. Today is decision today so will see how it goes.
I have collected just over £100 up to now. Hopefully we will equal last years £612 so lots of buzzy bees.
I think in your place id have a conversation with some of the other staff that you find approachable. Tell them your concerns and you may be surprised.
I'd also definitely ask about the consultant's plans because if they are never returning it may sway your decision.
Totally agree that a team you can trust, rely on, talk to - and that treat you like a human being (I always think would you be like this with your mother / father?). If you don't have a team you trust, maybe look elsewhere, as hard as it is to do. A team is only as strong as its weakest link.
Thahk you great advice. Last year one of the Nurses had a word with him and the consultation that followed was really good. Unfortunately I have not seen her for a while. I think frank discussion this morning, I feel stronger now than last visit and want a plan. My G.p is great if it wasn't for him I would not be mobile now and my job in jeopardy.
I had no relationship with my original rheumatologist and, in 2011, decided not to ever see her again and I could manage without anyone. . . I had no idea that there were any other rheumys within the hospital until I ended up sitting in the emergency clinic one day in front of a very charming, proactive Rheumy who declared me 'chronically under treated'. Like you, I dreaded upsetting anyone so I wrote a brief letter to his secretary asking if 'I could remain on his list'. There was no need to say anything more, my appointment with her was changed to him. Everyone knows why but no salt has been rubbed into wounds and it was a very good move. Good luck!
That sounds like a good move. Sorry you had been under treated thats awful. Your move over sounds great. Thats what you want no fuss but just someone understanding. My G.p and physio want to move hospitals.
Forgot to say, don't mean this in a heartless way but don't worry about upsetting your rheumy. They (no offence) won't even notice most likely. How many patients does a rheumatologist have on their list? Idk.
If they do notice and have the time / thought to wonder why, maybe they will consider that they have failed a patient and that may mean a better experience for future patients of theirs.
But I suspect their lists get bigger not smaller. Regardless.
There is no right on the NHS to a second opinion. You can request one and the GP will most likely refer you but the GP is obliged to tell the new hospital that it is a second opinion and you will be pushed right to the back of the queue as you have already been seen on the NHS. The old hospital/rheumatologist does not have to be told.
You might find it easier to see a rheumatologist privately.
As regards the suggestion of writing everything down, they are just too busy. I tried to tell my NHS rheumatologist a few things and he told me to stop interrupting him and he would give me a chance to ask questions at the end. Before the end came, he got up and opened the door and hussled me out. The next time, I had everything written down and handed it to him, and he asked if that was his homework. I nearly said that I'm sure somebody would do the homework for him but sometimes these characters can be touchy.
All in all, there just aren't enough rheumatologists working in the NHS and all you get is five minutes after the initial 20 min appt. They really don't have time to listen.
Thank you for that. I would expect a long wait if I went down this route. As long as I can continue on current treatment triple therapy. It is a bit of a mine field too.
Funnily enough a year ago I did do a list for him, handed it to him and he refused to read it, said I would have to tell him. He didn't give me the time or opportunity.
This time done bullet points and I will try to get him to listen.
Well W ritting things down didn't get me anywhere. But I did tell him I was upset after last Consultation and he apologized. He explained his actions. I do not dislike him but I do not get any answers to questions.
Did speak to reception staff and found out about other Consultants so decision time on Tuesday.
Plus he did inject my knee so that will help when it settles.
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