LUPUS UK

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Moving hospital trust: Rheumy (kind of) first appt. tips

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.

Written by

Amakura

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13 Replies

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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).

Hope all goes well.

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.

Amakura -

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.

Best of luck.

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

The doctor will know what questions to ask. They won’t have to have the notes to get to know you. Have your medication list ready.

They will want to hear your medical history in your own words anyway. I wouldn’t be too concerned about the documents.

Assume the notes will not arrive and make a list of your main medical issues and current concerns.

xx K

Thank you so much for sharing your tips. I will work on compiling my notes and the most up to date medication list. xx

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.

All the best going forwards.

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).

Which hospital are you moving to xx

Imperial Trust x

Where is that x

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!

Good luck!

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!