The reason why I've said 'kind of' is due to the fact that I'm moving my care to a different hospital trust, so I've already communicated with Rheumatologist(s) before BUT I'm rather anxious as - like many of us - alongside my Lupus diagnosis, I have a few autoimmune conditions (a couple of rare ones) and the volume of my hospital notes including results are the equivalent of Barbara Cartland's entire bibliography! So, I've found that and more than likely due to a number of factors (hospital notes not arriving on time, outpatient emergencies, overbooked clinics), understandably, they don't have time to go through everything and then the patient is expected to provide Mastermind/University Challenge answers their questions. The only difference is that I won't have any team members to buzz in and respond on my behalf and a black leather armchair to sit on. I'm aware that not all consultants have the same bedside manner but I've found that I respond better to those that adopt a more Lorraine Kelly kind of style: personable, maintains eye contact, relaxed, calm and measured.
I would like to prepare for this appointment in such a way, that I can get the best out of my rheumatologist appointment - for not only myself but for the specialist as well. So, do you have any tips? For instance, I was thinking of bringing my laptop so I can access my hospital patient portal (recent MRI, CT, hospital letters) in the event that my notes are not sent over in time but I can imagine, this might be off-putting. Otherwise, I could bring my folder for any historic questions - it holds all of the letters that have not been migrated onto this portal. Although, again, the size of the folder, might frighten them off.
My main concern is the Mastermind/University Challenge questions. The quick-fire quiz. When I'm fatigued and feeling weak, it's a massive worry for me because when I'm unable to immediately recall the information they require, their response is 'not to worry' and they quickly move on to the next question and the next question and the next question. It is a worry because if I had enough time to line up my brain cells, I would be able to provide them with the important answer. I usually depart feeling frazzled, deflated, disappointed and invisible - if that makes sense. Hence, my laptop and/or folder suggestion.
I am panicking. It's like a final exam sort of panic! I've mentioned this before but it's just that I find it really difficult trying to not only be the patient, the carer (for myself) and the advocate, all at the same time.
Your pearls of wisdom would be greatly appreciated.
P.S My appointment is the first week of July, so I thought it would be best to start preparing a little bit at a time.
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Amakura
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I would prepare a few notes to cover off what you consider the most important things. Diagnoses with dates. What day to day issues do your conditions cause you. Past problems and what seems to be getting better or worse. Meds, what has been tried, what works, what doesn’t. Depending how soon you will be seeing the consultant again, make sure you have covered the bits that are important to YOU. Check how to contact them between appointments and how you will get your meds, bloods etc done. If you have any annual tests that you need a referral for, when are these due.
Ask the rheumy how much they know about the different diseases. ( I have scleroderma, not lupus and I tried this one on my new GP and new dentist recently, was rather disappointed at the responses, especially as the dentist had quite obviously not read the health and medication summary that I had updated for her).
Thank you so much, cowhide . This is extremely helpful. A succinct approach that puts the control back to the patient. Really appreciate it!
I've also experienced similar with my GP surgery. Their get-out clause was the fact they only specialise in general medicine and their knowledge of autoimmune diseases is limited. To be fair, from what I've been told, there are hardly any AI patients registered at the surgery. So, I rely heavily on the hospital for medical interventions/support.
I think the others’ suggestions are great. One thing to remember - that I have learned over many years - is that it takes time for your doctor to get to know you and you to get to know them. With a complicated patient like yourself, they may have some goals like getting a handle on your involvement, medications and functioning. This would be a good opportunity to ask their opinion of your treatment plan and whether they think it should change.
Good question about the rare autoimmune diseases. They may get a consult for you or simply communicate with colleagues who has more experience. We have seen that here on the forum.
Try not to worry about the size of your medical records. They have ways of honing in on the key issues. As an example, they can go through the former doctor’s notes - at least at my hospital they are separate - but give clear relevant information about you, probably in a short doctor’s code. So they will know about you than you think.
I have a feeling you will be fine. You maybe needed to just express your fears. Remember it is a partnership and you are the most important in that partnership.
Thank you so much, KayHimm and what you have shared has reassured me. Really appreciate it. Although, what happens if my hospital notes are not sent over in time. Any tips for when this happens? The reason why I ask, is at the very beginning of my Lupus et al conditions journey, on one occasion the notes were not received in time. x
Hello there. I chose to do this about 9/10 years ago, because I was being met by professionals who were openly saying that they knew nothing about lupus. I have additional complex autoimmune conditions. I didn’t have my records transferred….you’ve made me think, but I have got on really well with the new team and the rheumatologist in particular. It was the best decision I had made and changed the course of my health care.I agree with others comments and I always prepare for my appointments anyway, to ensure I get the right responses to my current situation.
Thank you, sewalongwithme and I hope to experience the same.
I'm just assuming they will request my notes. I don't think, and anybody can correct me if I'm wrong, there's an obligation to forward a patient's notes unless the hospital the patient is transferring to decides it is required. I am guessing here and could be wrong!
From now on, I will prepare for my appointments. I'm just used to, prior to being diagnosed with all my AI conditions, not having to. It was structured and straightforward (since birth - asthma, pneumonia and eczema - although, how everything panned out, it was most probably Lupus all along).
Hi Amakura,I changed hospitals 6 years ago and was nervous like you but I'd had a niggling feeling that my care could be better so I took the plunge. My notes are War and Peace-like and I had the same concerns. I typed out a potted history, with dates etc. I kept it as short as possible (it was still pretty long), bullet points etc and found that as I wrote more and more came back to me. I have all my letters (nearly 30 years worth!) so I could refer to them too. When I got in there, I just handed the history to him and said "I hope you don't mind, but I thought this could help. " He said afterwards that it was so helpful for him. It turned out that he wasn't a good fit for my case, which was disappointing, BUT I was then referred on to another rheumatologist and I haven't looked back! I finally feel like I am steady away with my pain and my health generally. Of course there are bumps in the road but it was the best decision I've ever made regarding healthcare.
If you write it all down beforehand, it's like taking a cheat sheet into your exam!
Thank you, Shobbs . I will adopt the same method for my appointment and it's answered my question about if my hospital notes are not sent over or if the rheumatologist doesn't have time. At least, at the same time, by collating this information, as pointed out by yourself, I will be refreshing my memory.
Glad to read that you have finally hit the jackpot!
cowhide KayHimm sewalongwithme Shobbs Just wanted to provide you with an update:
First and foremost, thank you so, so much for your advice and support. I planned, even up until the night before and I was armed with my very small A4 plastic folder armed with symptoms, diagnoses, a list of my multi-disciplinary team incl GP, recent test results and most recent hospital correspondence.
Seeing a student prior to the actual appointment, threw me off as I had it all planned. I was already anxious because got lost in the hospital and had taken the wrong turning on the way there. So as you can imagine, at this point, the appointment curveball made me not only anxious but also nervous. I was literally shaking and brain fog had kicked in. Admittedly, at no fault of their own, it's just that - like all of us - it was the thought of possibly experiencing, once again, a specialist who treats you as though you've specifically booked the hospital appointment to read them a Jackanory children's story aka you're a hypochondriac aka dismissing your symptoms. I tried to relay everything but failed due to my anxiousness.
My letters and tests were not transferred over to the hospital for the appointment. I tried to signpost them to my documents but they showed very little interest and then when I referenced, again, one of the documents, their interest suddenly piqued. I've been instructed to email some of the hospital correspondence and test results to them instead. Nevertheless, due to my nervousness brought about by my previous experiences and being in so much physical pain, there came a point where I literally gave up and allowed them to take the lead.
Did I relay everything that needed to be shared? No. Are they to blame? No. Some of my core diagnoses were not shared, as they took the lead from my GPs letter. NB: some of my specialists delay their clinical outcomes to my GP. I'm the central information hub for all of my specialists. I'm currently awaiting the outcome of my blood results. There were some favourable reassurances made during the appointment, though.
All in all, I wish I had someone with me at the appointment and also not prepared up until the night before. Finally, I didn't realise, up and until now, that the constant disbelief and dismissal of some specialists over the years, can have such a major impact on me (and most probably on others as well). Not sure how to remedy that bit though!
Again, thank you so, so much. You all were amazing. I'm going to try and update the symptoms, diagnosis etc. as I go along in order to avoid this (last-minute prep) from happening again.
You did great. It is not our responsibility as patients to prevent things in a perfect fashion for doctors. It is through, we hope, good questioning and clinical skills that they get the information from us. The best doctors can get information from talking about everything but a patient’s symptoms. If they were astute, they noted you were in pain after having to find your way through hospital halls.
It takes a long time for a new doctor to get to know you. Yes, you, not just your symptoms. Your GP probably had a good summary of all of your conditions so they had a good idea of how complicated you were before you started to talk.
It will take a while to get over feeling you have been treated in a dismissive manner. The fastest way to overcome it is to question the new doctor. Ask straight out if he thinks this is anxiety related, lupus-related, or something else. Don’t leave until you get an answer even if it is just an admission of « not sure yet, need to do more tests. ».
My neurologist answered me a couple of weeks ago with, « we are still learning about. » I’ve been his patient at least six years. 😂. Hope that makes you feel better.
Look forward to hearing about your next appointment. 🤸🏼♂️
Thank you so much, Kay, for your kind and compassionate words of wisdom.
I must admit, I do pose questions to doctors but as soon as I receive a (broadly interpreted) answer, I never dare to question it further due to previous bad experiences and my response is always a baffled and submissive 'okay', just to keep the peace. i.e. the fear of being labelled 'difficult', disbelieved or they start sighing loudly. What happened this year and last year, a respiratory consultant refused to share my results and instead redirected me to my GP. As his consultations consisted of him speaking, gleaning information from the clinic letters and you being quiet throughout the entire consultation. No corrections from the patient are strictly not permitted! Apparently, he has a bit of a reputation. I haven't got the strength to write an official complaint yet.
Again, your support is very much appreciated and they have most definitely been taken onboard.
Asking respectful questions is hardly being a difficult patient! You have been traumatized by past experiences. Get in the habit of asking for advice and I know a good doctor will respond. After all, that is their role - science-oriented advice givers.
I try to give doctors credit for positive past experiences. My neurologist is a great explainer of complicated things. So I told him that. They get a lot of patients thinking they know how to treat everything from acne to heart failure just by a Google search. It has to be demoralizing.
New mantra: you are not difficult, just well-uninformed and want explanations.
Amakura, Reading your posts make me both angry and sad. I can relate to everything you are saying. For me my lack of overall self confidence and anxiety gets in the way. The rheumatologist I have now for a couple of years knows very little about me as a person and truthfully, only a small portion of what the last 25 years of lupus, etc. are like.. The first appointment was a room of students taking history and yes, the records from my previous doctor who I liked, but relocated supposedly never arrived. Then the doctor met with the students and came in and spent a bit of time with me. It has continued to be like that. I could go on, but I know you already know what it is like. I hate the appointments because I know ahead of time, I will feel self defeated at the end. I admit some of this is my problem, but I also know that I am not the only patient that probably leaves that way. But, I get my prescriptions and that is the only way to get them. I have a good GP who so far listens so I am grateful for that and have had a few good rheumatologists in the past. I just wish that doctors would see us as people enough to act compassionate and understand how hard it is to have so many things go on in our bodies that for the most part make no sense. By the way, I also get lost and the doctor has even witnessed my confusion. Unfortunately, it is up to the doctor to decide if he wants to really "see" us. Wishing you all the best and letting you know that we are doing our best, but we can't make them do their best to see us as more than code no. and prescriptions.
Ohhh, its reassuring to read I'm not the only BUT at the same time, it highlights what we all have to endure and they wonder why the vast majority of us are suffering low self-esteem plus feeling deflated! Even individuals, who are not medical experts, everyday folk but know of someone who has Lupus, when I share my diagnosis, they're immediate response is concerning the length of time to get diagnosed and the battles with medical consultants. It's now common knowledge.
Not sure if I'm being naive but I'm really, really hoping that things will turn around sooner rather than later. It has to!
I hope things improve for you because it is tiring!
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